It’s a little ridiculous how long it’s taken me to write this post.  Oh well!  Our trip to Disneyland still deserves to be documented.  Someday I’ll forget all the wonderful memories created during our three days at the Happiest Place on Earth and will need to refer back to this post to remind me!

We headed to Disneyland Sunday morning after the CRF conference ended and we said our goodbyes to my parents and Amber.  Then the rest of us piled into our rental van and headed to Anaheim to get checked into our new hotel and then head to Disneyland.

Waiting in line for the “scary” Snow White ride. Haddie loved it! Stella, not so much.

We rented a double stroller and it was the best decision. They napped in that sucker every day!

The most obnoxious ride of all time…It’s a Small World!

The initial entrance to the park was thrilling!  I’m pretty sure all of the adults were as excited (or perhaps more) than the girls.  I love the image of the Mickey created by flowers that welcomes everyone to what’s sure to be a magical experience.

We started off in Fantasyland and rode several of the rides there.  We also watched that afternoon parade and were able to see most of the characters on the girls wish list.  The looks on their faces were priceless!

Melting down! Fortunately, they held it together pretty well the entire trip.

Stella chose hot pink Minnie Mouse ears…big shock!

We hung out at the park pretty late that first evening but didn’t last long enough for the fireworks.  They didn’t start until after 10pm and we were all too tired.  Little did we know that the fireworks only happen on the weekends so we didn’t have another opportunity to see them.

We headed back to Disneyland the next day and saw and did just about everything.  The girls were troopers and loved just about every ride we went on.  The exception was poor Haddie on Pirates of the Caribbean.  She thought it was too scary and buried her little head both times we went on the ride.  Yeah…we tortured her and went on the ride twice.  In fact, it’s the only ride we went on more than once.  We went on it the first day and Stella absolutely loved it!  It’s definitely one of my favorites too.  We all decided we’d like to eat at the restaurant that’s connected to the ride so we made reservations for lunch.  It was a lot of fun and the food was really good.  Afterward, Stella begged to go on the ride again so we obliged.  Haddie is a trooper and didn’t mind.  She never cried or fussed but she sat between me and Ben and snuggled in for the ride.

Meeting Ariel was a special treat!

Snow White’s wishing well!

We spent the bulk of the day at Disneyland before heading over to California Adventure in the late afternoon.  What an awesome place!  It was everyone’s first time and we all loved it.  I especially loved the fact I could get a glass of wine and kick back while the girls napped in the stroller!

Waiting in line for the Tower of Terror. Wow!      That ride is intense.

Since there were five adults, we were able to take turns watching the girls so we could hit all the rides.  We particularly enjoyed Tower of Terror (oh holy hell) and the river ride!  The girls loved the gigantic ferris wheel and the water show at night.  I think the girls were really the only ones who liked the ferris wheel.  We chose to ride in one that slides and it was pretty freaky and a little nauseating.  Dani Jo was a little scared and Stella thought that was hilarious!  I can’t believe how brave they were on that ride.  They laughed the whole time!

Don’t let the cute Mickey fool you. This ride is something else!

Our last day was spent solely at California Adventure.  Our first stop that morning was breakfast with the princesses.  A character meal was included in the package we bought from Costco and I’m so glad we went that route.  The breakfast was a highlight of our trip.  We were seated outside and were the first in line to green the princesses as they came out to meet the kids.  The food was great and the looks on the girls’ faces as they met the actual princesses was priceless.  We ended up meeting Ariel, Cinderella, Snow White, and Belle.

Meeting Ariel for the second time. Glad they didn’t realize there was more than one Ariel.

Cinderelly, Cinderelly!

This moment between Stella and Snow White melted me!  So sweet.

Beauty and my beasts!

Scott flew out early Tuesday afternoon and we ended up calling in quits around 4pm.  We were all exhausted and ready for some down time.  We went back to the hotel and enjoyed a laid back evening so we could get packed and go to bed at a decent hour since we were heading home the next morning.

We had a wonderful vacation and I’m so glad we made the decision to go to Disneyland and California Adventure.  I wasn’t sure there would be enough for the girls to do since they are so little.  I couldn’t have been more wrong!  It seemed there were very few rides they weren’t allowed to go on because of height restrictions.  I can’t wait to go back again someday!

I finally have a moment to sit down and share my thoughts on the Cystinosis Research Foundation family conference that we attended a couple of weeks ago in Newport Beach.  It was amazing!  This year my parents, Ben’s parents, Scott (Ben’s brother) and Amber (Scott’s girlfriend) joined us.  I’m so glad some of our family was able to enjoy this experience with us.

Waiting at the airport for our rental car. The girls were very patient!

Hello California!!

Resting up before the welcome dinner.

We arrived on Thursday and kicked off the extended weekend with a Mexican fiesta!  The girls had a blast with all of the kids.  I’ve never seen Haddie more in her element.  It’s like she knew these kids were her peeps and instantly felt a connection with them.  There is nothing better than watching your children thrive in their environment and thoroughly enjoy themselves.  All the big girls at the conference loved helping take care of Haddie and she milked the attention for all its worth!

Welcome dinner

So happy to be at the Day of Hope conference again!

Aunt Amber & Uncle Scott came all the way from Boise to join us!

My big girl playing on the stairs with all the kids

In her element!

My girls had a blast with all the “big” girls!

Jenna & Hadley are good buds! They look more like sisters than Haddie & Stella.

Such sweet girls!

Ready to call it a night!

The conference began Friday morning and lasted through early Saturday afternoon.  The first day included family introductions where everyone shared their hopes and dreams regarding Cystinosis.  It was incredibly touching and uniting!  It’s safe to say there wasn’t a dry eye in the house.  Most of the speakers on the first day provided information on the background of Cystinosis and how it affects the body.  We heard from Dr. Corinne Antignac who was one of the researchers who discovered the CTNS gene, which is the gene that causes Cystinosis.  There was also information on GI problems, muscle wasting and potential neurological issues that result from Cystinosis.  I was also compelled by the topic of dealing with a chronic illness as kids get older.  Compliance, or I should say, non-compliance is a fear of mine once Hadley becomes older.  I thought Dr. Grimm did a good job setting our expectations and giving some suggestions on how to deal with this stage in our children’s development.  I also really enjoyed the discussion we had with the panel of young adults with Cystinosis.  They shared their struggles and triumphs and gave valuable insight into what life is life with Cystinosis.  Most seem to be full of life and enjoying success and following their dreams.  Made me excited for Hadley’s future and curious how she will choose to live out this adventure.  We spent Friday evening outside near the beach for a BBQ with all the families and researchers.  The weather cooperated quite nicely and everyone had a truly nice time!

The CRF provides complimentary childcare during the conference. These caregivers are truly amazing! The girls both made necklaces that turned out cute.

The kids enjoyed some beach time while we listened to speakers. Good lawd my girl is white!

Yoga session?

Hangin’ with her peeps!

A balloon artist came and made awesome figures for all the kids.  Such a treat!

Haddie loved her dog!

Beach side BBQ!

Haddie showing some of her famous tude!

Playing with grandma and grandpa in the sand.

Our awesome family!

My stepdad, Brian, chatting with Nancy Stack.  She’s my hero!

Beach time!

Saturday’s topics of discussion focused on the current research and developments for Cystinosis.  We received updated information on the nanowafer that will revolutionize how corneal Cystinosis is treated.  Since the cornea doesn’t contain any blood vessels, regular  Cysteamine treatment doesn’t work to remove the crystals.  The only product available right now are eye drops that must be administered every waking hour.  While it’s great there is a treatment option available, it’s very difficult to remain compliant.  The drops were only FDA approved last year and just became available last week.  Prior to that, you had to go to the NIH in Maryland to obtain the drops or through a compounding pharmacy.  The nanowafer will change the dosing schedule and allow for much easier compliance and delivery.  It’s essentially a contact lens that is placed on the eye once and week and slowly releases Cysteamine to remove the crystals.  The research is thrilling and they are getting very close to a trial!

The most exciting and fascinating research that is underway is regarding stem cells and gene therapy.  I truly believe this is the future of Cystinosis and will eventually be the cure.  It sounds like we’re only a few years out for trial that would involve an autologous stem cell transplant, which means the stem cells come from the person’s own blood or bone marrow.  The stem cells will be removed, genetically modified and then the healthy cells will be reintroduced to the patient.  The chance of rejection are much smaller using this method.  They have already been able to reverse Cystinosis in mice through a bone marrow transplant and kidney function was restored to some degree in the mice.  This is excellent news and the cause for much hope and encouragement!

We had some free time Saturday afternoon between when the conference ended and when the fundraiser event began.  We decided to rent a boat to putz around the bay.  Ben, Haddie and I did this last year with the Partington family and had a great time.  It was fun going out again this year.  There are some incredible homes to look at on the hour long ride!

Ben and his girls on the boat

How did she get so big so fast?

Stella’s selfie!

Resting with mama before the big celebration!

The weekend came to a  memorable close at the Natalie’s Wish event Saturday night.  The night raised 2.2 million dollars…yes, million for Cystinosis Research!!   I was once again astounded, grateful, humbled and honored to be surrounded by so many generous and caring people.  Because the CRF is fully underwritten, every single cent of that 2.2 million will go toward funding more research to help my Haddie and everyone else with Cystinosis.  Amazing!!  The night consisted of an amazing meal, entertainment by American Idol Winner, Taylor Hicks and a live auction.  Taylor Hicks was great and added a lot of fun to the night.  He wanted to meet all the families, so we had the opportunity to hang out with him a bit before the event started.  He posed for pictures with everyone and seemed genuinely kind and down to earth.

Our family with Taylor Hicks

Haddie isn’t sure what to make of all this!

Drinks before the Natalie’s Wish Event

It was beautiful night!

We presented a check to the CRF from our fundraising efforts toward the end of the night so Haddie and Stella got to stay up late!

There was an after party after the Natalie’s Wish event ended that Ben and I attended.  We ended up closing down the place with a few others.  I could have stayed talking with everyone all night.  How often do you get to talk one on one with researchers, doctors and drug companies regarding a rare disease your child has?  We had a little too much fun and ended up paying for it the following day at Disneyland.  It was absolutely worth it and I’m so thankful Ben’s parents were sharing a room with us so that they could stay with the girls while we attended the after party.  Needless to say, they felt fine the next day!

Our entire family enjoyed the weekend and feel more knowledgeable and hopeful now.  There is so much going on to better treatments and to ultimately find the cure and we have Nancy & Jeff Stack to thank for that.  Their passion, tenacity, resources and love for their daughter (and everyone else with Cystinosis) has changed the future of Cystinosis and for that I am so grateful!

Stay tuned for Part 2 of our California vacation when we hit up Disneyland and California Adventure with Ben’s parents and Uncle Scott.  It was magical!

We leave in two short days for sunny California to attend the Cystinosis Research Foundation family conference.  I’ve anxiously awaited this weekend pretty much since last year’s conference ended!  It was an incredible event that helped introduce us to our new world in a positive and hopeful manner.  I can’t wait to see what’s in store for us this year!

We fly out early Thursday morning along with both sets of parents.  Ben’s brother, Scott, and Amber will be meeting us there too!  I’m thrilled for our families to meet our Cystinosis family.  I have no doubt it will be a moving and emotional weekend for everyone!  There will be lots of fun too.  Stella is excited to meet other kids with Cystinosis and their brothers and sisters without.  I think it will be as meaningful to her as it will be for Haddie!

The conference begins Friday morning and ends Saturday afternoon.  We’ll close out the weekend at the Natalie’s Wish fundraising event.  All the Cystinosis families are welcome to attend an amazing evening of great food, incredibly generous donors and awesome entertainment.  Last year, nearly 2 million dollars were raised for Cystinosis research at the dinner.  I hope they raise even more this year!  Taylor Hicks (American Idol winner) is our entertainment this year.  Apparently he is interested in our cause and is looking forward to meeting the families.  I’m looking forward to meeting Mr. Soul Patrol myself!

The following morning we say goodbye to my parents and Amber while Ben’s parents and Scott join us for three days at Disneyland!  Our whole family is excited for our Disney adventure.  The girls have been talking non-stop about everyone they will meet at Disneyland and all the things they want to do.  Ever since we decided we were taking this vacation, the girls have been saving money in their piggy banks.  We told them once it was time to go on vacation, we’d take their piggy banks to the Coinstar machine at Fred Meyer and turn their coins into dollars.  We said they could spend all the money from their piggy banks on whatever they want at Disneyland. I was surprised and amused when they ended up with a total of $120 combined from their banks.  This is mostly because grandma and grandpa knew of the plan and generously helped by giving the girls a ton of change…and some cash!  They each have $60 to spend on crap stuff I’m sure they can’t live without.  The top of the list for both of the girls (thanks to me) is a pair of Minnie Mouse ears.  Every kid needs a pair of those on their first trip to meet Mickey!  They also plan on getting autograph books for all the characters to sign.  They especially want to get the signatures of all the princesses they are going to meet at the princess breakfast we’re attending on our last morning.

This is the first time we’ll be away from home for a full week since Hadley was diagnosed with Cystinosis.  This means packing takes on a whole new meaning.  Packing for a family of four is a pain in the ass no matter what but when you add the addition of packing for someone with medical needs, it’s a bit overwhelming.  Just packing enough meds for a full week is a task let alone everything else.  Luckily it’s worth all the lists I’ve made and the vast amount of time it has taken.  We look like we’re going somewhere for a month!

I know I will have a lot of wonderful stories and pictures to share upon our return!!

I just enjoyed some quality time snuggling with Stella before bedtime.  I love private moments with her when she’s sleepy yet desperately trying to stay awake.  She rambles on a bit but we end up having great conversations!  It made me realize that I haven’t written an update on her in far too long.

Stella is 3-1/2 years old and still blowing us away with her amazing little mind.  She is full of life, hilarious, and a bit sassy!  She still loves school and is currently involved in two extra-curricular activities (and so it begins).  She started swim lessons last week at the YMCA.  The lessons take place during school with a group of her little friends.  She’s also been taking a dance class after school on Thursdays with a couple of her girlfriends from school.  She loves it and it’s been a great creative outlet for her.  I only wish Haddie was old enough to join in on the fun too.  They would love doing it together!

Stella remains an adoring and loving big sister.  They certainly have their moments of irritation, but the majority of the time they are the best of friends.  If anything, Hadley picks on Stella more than Stella bothers Haddie.  Stella makes up songs about loving her sister and will often run up to hug and kiss her for no apparent reason.  She talks about missing Hadley when they aren’t together and has gotten better about sharing things with her little sister.

Stella is extremely bright and craves knowledge.  We’re still working on identifying all letters in the alphabet and being able to write her name.  We haven’t been as diligent with that as we probably should be.  She’s great with her numbers and she surprised me this morning by counting backward from five.  Maybe she’ll be good at math and put her mom and dad to shame!

Both of my girls have taken after their dad and are quite artistic.  Stella loves doing “projects” and can sit at the table for long periods of time drawing, painting, “writing”, and playing with stickers.  She’s even coloring inside the lines now and enjoys workbooks that involve matching things and solving problems.

Stella is a big time lover!  She wants everyone to be her friend and makes sure people know she cares about them.  When you come to our home you are greeted with a warm hug and when it comes time to leave you may get several hugs and quite possibly some kisses.

Three has been a challenging year.  We regularly have to remind Stella that she needs to stop and listen.  She can lose her mind if something doesn’t go exactly as s he envisioned.   She can love something today and then give it a stink eye tomorrow.  She’s a typical 3-year-old and I love every bit about her!

Hadley was diagnosed with Cystinosis a year ago today.  We expected the outcome but the news was still painful to realize.

We anxiously awaited the phone call from Dr. Fouser, Hadley’s nephrologist.  We heard it could take a couple of weeks to receive diagnosis after the WBC blood draw.  I was far too impatient to wait that long and we were getting ready to leave town to spend Easter with Ben’s family.  I was worried we’d get the call while out-of-town.  I wanted time for our little family to absorb the news before shared with the world.  After some encouragement from people I’d already connected with in the Cystinosis community, I emailed the doctor at UCSD who conducts the WBC cystine level test.  I received a very heartfelt response at 6:30pm on April 4th, 2012.

Dear folks,

The sample arrived on Wednesday 3/28/12 and the analysis was finished 4/2/12. I just got back to town today, just got to lab to review it, and I must tell you that it is positive for cystinosis. While that certainly is not good news, it is good to have a diagnosis and to know exactly where to focus efforts.  There outlook is  so much better than it was 20 years ago, or even 5 years ago, and there are great sources of support for you. I will try to add support as well, but the first thing is to be sure that you have a doctor whom you trust and resources at home.  (Note: per lab SOP, we’ll send a positive report to Dr. Fouser by fax if we have the number). Let me know how I can help.  We should have contact from time to time in any case, and I’ll be waiting to hear Hadley’s progress. 

Be well,  Bruce A. Barshop, M.D., Ph.D.

The diagnosis felt like a death sentence at first.  Cystinosis is considered a terminal disease and when faced with this knowledge, life suddenly seemed to fall apart.  It plagued my mind day and night.  I couldn’t wrap my head around the notion that I would outlive my daughter and that this terrible disease was going to rob her of the life she deserved and that I’d dreamed of for her.  Fortunately, it didn’t take long for those awful thoughts to pass.  Two short weeks after diagnosis, we attended the Cystinosis Research Foundation Day of Hope family conference.  In the span of a single weekend, our perspective  and outlook of Cystinosis changed.  After listening to top researchers and doctors discuss new treatments and the possibility of a cure, we felt some of our fears start to fade and hope creep in.

We’ve spent the past year navigating through the ups and downs of dealing with chronic illness.  There have been rough times (hospital stays, surgery, regular blood draws, constant vomiting) but there have been so many amazing moments too (learning to walk, swallowing bites of food, sleeping better, gaining strength, gaining weight, growing!!!)

Today we choose to celebrate our year with Cystinosis!  We’ve come a long way in twelve little months.  The diagnosis is not something you’d ever wish for but it allowed Hadley to get the treatment needed to improve her health and to stop the accumulation of crystals in her cells.  I’m thankful every day we finally got the diagnosis because it’s allowed Hadley to thrive!  She is doing so well right now and that is all thanks to the crazy mix of meds she takes every six hours round the clock.

I no longer view Cystinosis as the end of the world.  Don’t get me wrong, it still scares the hell out of me, but I choose to focus my attention on the positive progress that is being made to cure the disease.

We’re gearing up to head back to the CRF Day of Hope Conference again in two weeks where we’ll once again be amazed and in awe of the latest developments in research and upcoming treatments.  It’s where we’ll see families we met last year and meet new ones this year.  There is nothing quite so powerful as connecting with others who share a similar story and situation.  You feel an instant connection and sense of family.  The common denominator is love!  It’s the crazy, unwavering love you have for your child or loved ones.  I’m really looking forward to filling up with those feelings again and this time with Stella and some of our immediate family in attendance.

Thank you to everyone who has provided our family with love, strength, hope and support over the past year.  Quite honestly, we wouldn’t have come out of this without you!

Newborn Hadley! Born 9/6/10 and perfect in every way! Our surprise miracle baby who has provided us with so much love and joy over the past 2-1/2 years!

So happy and content many months before diagnosis. She was such an adorable, chubby baby. She weighed 21 lbs. at 6 months old. By diagnosis she was down to 19 lbs.                                                 She’s gained over 6 lbs. since then!!  

First stay at the hospital right after she turned one. It took another 6 months before she was finally diagnosed.  That stay was so difficult and it was awful leaving after three days with no answers.

Second hospital stay. She was admitted shortly before diagnosis due to an illness that caused her potassium levels to plummet.

Baby jail! I hate the crib beds in the PICU. She spent very little time in the cage.  She much preferred our arms.  How can you blame her?!?

She loved hanging out on the window bench and checking out the city below!

Sisters snuggling and watching a movie while waiting for Haddie’s g-tube surgery.

Right after the surgery to place her g-tube. She is one tough girl! Next week marks a year since she got her tubie!  Still thankful for it every day.  Makes giving her meds a breeze!

Sporting our Hearts 4 Hadley shirts last summer while at the Oregon Coast.

Gettin’ their love on!!

Showing her silly side! This girl has an awesome sense of humor.

Hanging out in Dr. Fouser’s office waiting for a check-up.  I love her chubby, little legs!

Girlfriend LOVES her ice cream!

Recent trip to the eye doc to check the crystals on her cornea.  She looks like such a big girl in this one!

My beautiful girl who is full of love and life!  I love her to pieces.

We lucked out with amazing weather for Easter weekend!  Both days were sunny and warm and we enjoyed spending most of the days outside.  This was the first Easter we’ve spent at home since we had kids so I wanted to make it special!

Saturday we hosted a little Easter get-together for the girls and a few of their friends.  We had brunch, dyed eggs and ended with an Easter egg hunt.  I asked each family to bring a dozen hard-boiled eggs and ten plastic eggs filled with goodies to help make my life a little easier.  We had a lot of fun and my party planning thirst was quenched!

Sunday morning began with a visit from the Easter bunny.  I heard Hadley get out of bed first and run to the living room.  She squealed with delight when she saw the little Minnie Mouse stuffed dolls in both girls’ baskets.  She grabbed them both and ran back into her room to wake Stella.  She kept saying, “Staya, yook what we got.  It’s Minnie! ”

That quickly got Stella out of bed so Ben and I joined them to look through the rest of their baskets.  Celebrating holidays with my kids is one of the best joys in my life.  Starting traditions and creating memories with my family fuels my soul!

We spent most of the day at home enjoying our new back yard.  The girls helped me fill my new beds with plants my mom gave me from her garden.

Later in the afternoon we headed to my mom’s house for Easter dinner.  The girls were decked out in Easter dresses my mom made for them along with new Salt Water sandals.  We were greeted with a giant Easter basket filled with goodies for our whole family.  Next we headed outside with a cocktail and some snacks and the girls went on another egg hunt.  The girls had a blast running around the yard collecting eggs filled with candy and coins.

We feasted on a great meal of ham, asparagus, twice baked potatoes and green bean casserole.  The night concluded with my mom’s amazing coconut cake.  We went home with full stomachs and happy hearts!

It’s the time of year where we yearn for sunshine and the chance to spend time outside!  We’ve spent the last several months cooped up inside; avoiding the cold, gray Seattle skies.  Oh…and did I mention wet?!?  Alas, the birds have started to chirp and the sun has begun peeking its shy head from behind the clouds.  Spring is officially here!

St. Patrick’s Day marked the 6 year anniversary of owning our home.  A lot of wonderful things have happened in our home the past six years!  One thing that never quite happened was fixing the our back yard.  It has an odd lay-out that we had high hopes of fixing as soon as we moved in.  Ben started working on it…oh 4 years ago and then life got busy.  After Stella was born, big projects (especially in the yard), fell by the wayside.  Then Hadley came shortly thereafter and the yard continued to just sit there, haunting us with its heinousness!!  (Yes, I made up that word!)

We were lucky to score a fantastic play structure for free before Stella was born.  The girls absolutely adore it and want to play on it all the time.  We knew we couldn’t pull off another summer with the yard a mess and the fact it’s not safe for wee ones to play around so Ben had a few different guys come give us a bid on fixing it.

He selected a company call Leaf it to Me because the price was right and the guy said they could knock out the project in a day or two.  I love a good deal and instant gratification so we hired them to do the job.  They did an amazing job!!  I highly recommend them and will absolutely hire them back for any future project.

In a little over a day, the crew created a safe and beautiful back yard for our family.  In addition, they mowed and edged our entire yard and fixed our vegetable bed that was overgrown and sad-looking.

I have three new garden beds that I’m hankering to fill!  I can’t wait to spend quality time out there with family and friends this summer.  Our vision has finally been realized!

The dreadful before shot. I’m embarrased we let it sit this way for so many years. Yikes!  Yes, that is a dangerous pile of rocks directly beneath the swings.

The beautiful aftermath! They did a really great job. We just need to re-seed some grass, plant some flowers and we’re good to go!

In exactly one month from today our family will be headed to New Port Beach, CA to attend our second Cystinosis Research Foundation Day of Hope Family Conference.  To say we’re anxious and excited is to put it mildly!

We attended the conference last year only two weeks after Hadley’s official diagnosis.  It was an incredibly informational, inspiring, and hope-filled weekend and I know this year will follow suit.  This year our families are joining us for this amazing event where we’ll hear first hand, the latest discoveries from the top Cystinosis researchers.  Even more wonderful is spending time with other families affected by Cystinosis and watching Hadley play with kids just like her.  She was the baby of the bunch last year.  She couldn’t walk yet and was still weak and just beginning treatment.  This year she’s a big girl who is running around, talking up a storm and full of energy.  Even better, she’s bringing her big sister along for the ride!

My mom and step-dad, Ben’s parents, and two of his brothers (Mike & Scott) along with their lovely ladies (Becky & Amber) are joining.  They all expressed interest in learning more about the current research and meeting other families so we welcomed them with open arms and so did the CRF.  It will be a memorable weekend for everyone!

The conference begins the evening of April 18th with a welcome dinner and is followed by two days of speakers.  The weekend ends with the Natalie’s Wish Celebration; an amazing night that last year raised 1.75 million dollars for research.  I’m really looking forward to our family enjoying this special night with us.

The following morning we’re packing up and taking the girls to Disneyland!!  Ben’s parents and Uncle Scott and joining us for three days of fun (hopefully in the sun) with Mickey and pals.  The girls are beyond excited…and so are we!  We’ll split time between Disneyland and California Adventure.  We’re also going to have breakfast with the princesses at Ariel’s Grotto.  The girls can’t quite wrap their heads around the fact they are going to be in the same room as all the princesses at one time!

The last year has been pretty rough for our family and we figured Disneyland is the best place to go for some well deserved fun!

The CRF posted this short video on Facebook a couple of weeks ago.  I’d all but forgotten the video taken of us at the conference last year.  I was caught off guard when I started crying watching the clip.  My how far we’ve come in one year!  We’re still very new to this life of Cystinosis (and I stress the word LIFE)!  However, we’ve learned so much in a short period of time.  I can’t believe how little Haddie looks!

I’m officially two weeks late posting about our wonderful weekend when Ben’s family was in town.  I had a post mostly written that explained our adventures in-depth and outlined all the fun we share and then poof….my computer ate every last word.  I was too tired and pissed to rewrite everything so I shut my computer and gave up for the night.  Um, that was a week ago and I’m just now returning.

I’ve been down with a nasty cold this week while working 6am-3pm to cover for a co-worker on vacation.  Needless to say, I’ve returned home exhausted and ready to hit the hay.  Instead, I do what is necessary such as feed and bathe my children, but anything beyond that has just not happened.

So I present you with our weekend in photos.  Perhaps not quite as interesting as my original post, but it’s Thursday night and I can already hear my pillows calling my name.  Weekend…I’m coming for you!!

The girls in line to ride the Great Wheel;        Seattle’s new(ish) ferris wheel!

Mike and Porter riding on the Great Wheel

Becky and I enjoying the ride. She had me cracking up a couple of times when we were at the top of the ferris wheel. She may have been a tad bit nervous!

Haddie and daddy…twins! The big girls got to ride with grandma and grandpa.

Cousin dinner!

There isn’t much better than a family dinner. Good food, wine and catching up.  I cut out poor Rich and Ben is totally MIA.  Sorry, fellas!

We spent Sunday morning at a new park Ben recently discovered right by our house. We were the only ones there.  It was chilly but the sun was out!

My girls love and look up to their big cousin, Kathryn!

Stella wearing her big girl shades and feeding the ducks. She’s such a big girl now!

Sweet Kathryn!

Grandma helped the girls feed the ducks. Next time we need to bring more bread!

A year ago I had no idea Rare Disease Day existed.  February 28th was just another day and had little significance in my life.  That all changed when a little over a month later Hadley was diagnosed with Cystinosis.

The federal government defines a rare disease or disorder as one that affects fewer than 200,000 Americans at any given time.  There are an estimated 7,000 rare diseases in the U.S. affecting 30 million people.  Cystinosis affects approximately 500 in the U.S. and 2,000 world-wide.  Because it is so rare, there is little federal funding available for research or treatments.  That’s why it’s imperative our small, yet fierce community share information and spread awareness.

Thank god there are groups like the Cystinosis Research Foundation, Cystinosis Research Network and Cystinosis Foundation who work tirelessly to raise funds and provide education.  Without their support, Hadley’s future would look very different.  Instead, we are filled with hope that there will be a cure in her lifetime.  In the past ten years, the CRF has funded over 18 million dollars in Cystinosis research.  The money has been generously donated by individuals with big hearts and open minds who understand the value and importance of clinical studies for a disease that otherwise would have been forgotten.

http://www.youtube.com/watch?v=DUsLgs0h6mw