My New Button

It's been a tough couple of months for Mommy and Daddy as they've struggled to make the decision whether or not to get a g-tube for me.  A g-tube is a feeding tube in my belly that can be used for blended foods and liquids as well as medicine administration.  In the end, Mommy and Daddy reluctantly decided to go ahead with the surgery because my growth has just been too slow.  Mommy tells me it will make me big and strong.  Daddy tells me that I won't have to taste my yucky medicine anymore!  I trust them and my doctor, JJ, so I know they're making the right decision.

I have great doctors and the g-tube surgery went great and I've healed perfectly!  Mommy and Daddy are happy and I like not having to taste my yucky medicine anymore.  Mommy makes healthy blends to feed me through my tube, and medicine time is much easier than before.  I’ve started to like my extra “button” and hopefully I will start to gain weight and height soon!

Friends For Life

What a wonderful trip Mommy, Daddy and I took this summer!  We spent a long weekend in Woodstock, NY with my BFF Charlotte and her mommy and daddy, Megan and Michael.  Charlotte has cystinosis just like me and is only a few weeks younger than me.  We are so lucky to have each other to take this journey together.  We learned so much from each other in those few days, and our parents bonded and understood each other in a way that only other parents of kids like me can understand.  We will have each other to call, vent, laugh and cry to.  Even though we live several hours apart (that's what happens with a rare disease!) we will get to see each other every year at the CRF's Day of Hope and at our annual family vacation.  Love you Charlotte!

2016 Fishing For Brooke's Cure

Daddy and his friends decided to have a small cystinosis fundraiser this past weekend; they went fishing (something they love to do!), and our friends and family donated money for every fish they caught!  After over 12 hours of fishing, Daddy and his friends caught 335 fish to raise funds for me and my friends;  I am so proud of them! 

Mommy and I anxiously waited to hear how their day was going; while the morning went well, the afternoon was a bit slower, and we were all worried that the fundraiser wouldn't be as successful as we'd hoped, as most of the pledges made were based on how many fish the guys caught!  But Daddy, Uncle Ian, Hans (Brooke-Trout Man) and my biggest supporter Ralph fished and fished, and fished some more, and really came through for me!

I just want Daddy and his friends to know how much I love them for helping me out.  I also want everyone who donated to know how much it means to me, Mommy and Daddy to have their support and love.  We will beat this disease because people like you are helping us along the way!  I can't wait until our next fundraiser!

2016 CRF Day of Hope

My parents and I had the opportunity to attend the 2016 CRF Day of Hope conference and Natalie's Wish gala. I had so much fun meeting all of the other kids and adults who also have cystinosis, and we learned so much.  Mommy, Daddy, and I were able to present Nancy and Jeff Stack, the founders of the CRF, with over $3,000 to be used to find a cure for my disease... We raised this money in just under 2 months, thanks to Mommy and Daddy's friends and family who took it upon themselves to help me out!! We love our friends and family so much for doing this for me, and we also love all of our new friends that we met at the conference.  We have a lot of hope that my disease will be cured in my lifetime, and we have also made friends for life because of this diagnosis.... We look forward to continuing to raise money for the CURE! 

Oh What A Night!

Last night I attended my first ever black tie affair, hosted by the Cystinosis Foundation of New Jersey. Mommy, Daddy and I got all dressed up, and I got to meet the other cystinosis families in my home state. It was so much fun! 

The gala was filled with food, fun, music, and good people.  Everyone there was supporting kids and young adults like me.  The Foundation did a wonderful job planning this event, and has raised over $500,000 in their 32 years of existence!  

I had so much fun with all of my new friends, and I felt like the belle of the ball.  I showed everyone my funky dance moves, and I charmed the pants off of the guests.  I can't wait to go again next year!

Thanks so much to the Foundation for having me as their "littlest" guest!

One Month Down, A Lifetime to Go (or maybe not?)...

This month, I started cysteamine, the special medicine that Mommy and Daddy give me every six hours.  They even have to wake me up in the middle of the night to take it! The medicine tastes and smells really yucky, but Mommy tells me it's really good for me, so I take it in stride. Mommy calls me her "little trooper".

While I still have to take a bunch of other medicine throughout the day, this new medicine is saving my life, and without it, my kidneys will get really bad, and so will the other parts of my body.  While the cysteamine won't fix me, it will slow the progress of my disease, and help me live a better life. Daddy told me I can't miss even one dose!

Mommy and Daddy have made really good friends since my diagnosis, with parents of other kids just like me. They all tell Mommy and Daddy that it will get easier, and it already has. I am doing really well on my medicine, I'm getting used to the taste and sometimes don't even need to wash the taste out of my mouth with juice!  Mommy and Daddy feel connected to the other cystinosis families, and have been able to lean on them for support and advice, which has made all the difference.  And I'm super excited to meet all my new friends who are just like me!

All the donations you make to me through this website or at one of the fundraisers Mommy and Daddy are organizing, go directly to the Cystinosis Research Foundation (CRF). CRF is the wonderful organization that donates all funds to research my disease.  This research is close to finding better medicine for me.  Even more exciting is that CRF scientists are close to finding a CURE for me!! That's right, I might not have to take the medicine at all in the future. That's why it's so important for you all to support me and all our new friends by making a donation.  Every dollar puts me one step closer to being a healthy kiddo with no more medicine needs - YEAH!

Hello My Name is Brooke

When I go out with Mommy and Daddy, everyone always comments on how cute and small I am.  At first, this made Mommy and Daddy sad because while I look healthy on the outside, they knew something was wrong on the inside.  But instead of feeling sad, they want to create awareness about cystinosis, so Daddy made me my very own business cards.  Now whenever anyone comments on my size, Mommy and Daddy hand them a business card and speak to them about my condition.

Welcome To My Blog

Thanks for visiting my website. Mommy and Daddy's friends started my site for them so they could focus on getting me started on my medicine as we begin our journey with Cystinosis. Mommy, Daddy, and I love my site and are so thankful to our friends! And, I am looking forward to keeping you all updated on my progress.