Our Story

Want to find out if you’re a bone marrow match for Alex?

In the United States?
Visit his Be the Match site for testing information or a kit by visiting http://BeTheMatch.org

You can also visit www.GiftinKind.org and www.DKMS.org if you’re 18 to 55.

In the UK?
Visit http://www.anthonynolan.org to register

We have also parntered with Gift for Life!
Regardless of where you’re located, you can visit www.GiftofLife.org/dc/SwabForAlex to register.

 

 

 

This is Alex…

Alex Sims was diagnosed with IPEX syndrome in 2016 – an extremely rare autoimmune disease that most doctors have never heard of – with fewer than 200 diagnosed cases. In addition to muscle, joint, skin and digestive problems, Alex developed Type I Diabetes at the age of 2 and has experienced countless hospitalizations due to viral infections.  

Alex is in the third grade. He loves reading and really enjoys being at school with his friends. At school, Alex gets to forget about his disease and just be a kid. When he grows up, he wants to be a super hero. Iron Man is his favorite because he has protective armor and nothing can hurt him.

Most IPEX kids die within the 1st or 2nd year of their lives. Alex wasn’t diagnosed until he was 8 years old and has a different genotype of IPEX than other kids did. Doctors are hopeful that with a bone marrow transplant, he will be able to survive IPEX until a cure is found.

There are so many expenses involved with IPEX treatment – extensive hospitalizations, monthly specialist visits, weekly labs, immune suppressing medication and the bone marrow transplant itself, the costs of which could reach up to $800,000!

In addition to raising the money for COTA in honor of Team Alex, a matching donor needs to be found. There are currently 20,000 people who could benefit from a bone marrow/stem cell transplant and an estimated 3,000 people die each year while waiting for a donor. Donor screening is simple with a through-the-mail cheek swab testing kit. The ideal donor is age 18 to 44, but donors through age 60 may be used in certain cases.

In order to take care of Alex, his dad had to give up his job. COTA for Team Alex needs all of your help. Please share Alex’s story on social media, volunteer to be a bone marrow donor, and donate to COTA today. Every donation can help save the lives of kids like Alex!

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

 

11 thoughts on “Our Story”

  2. Alex, my friends and I are here to support you and your family to getting all the help you need to beat IPEX. Stay strong buddy, we love you!

  3. The website looks great, and we enjoyed the video narrated by Alex. He is such a sweet boy, and we hope that the bone marrow transplant will give him the opportunity to lead a normal life. We’ll be at the volunteer meeting here next week.

  4. Hi Alex, we are all working and praying hard for you here in Bradenton, Florida. Stay strong!

  5. You are such a doll and have completely won my heart! ?? I pray that you’ll find a donor that’s a perfect match for you!!

  6. Thoughts and prayers are with you little man 🙂 I just signed up to request my donor kit.

  7. Alex, on Sunday Woody’s River Roo hosted a fundraiser to help pay for transplant expenses. About 1000 wonderful people came out to support you. They all send best wishes and good vibes and prayers for a donor and for a complete recovery for you, after transplant. Hang in there buddy, so many people are praying for you. You truly are a Super Hero!!!

  8. Hi Alex. All your friends and volunteers in Florida are trying very, very hard to sign up and register a lot of bone marrow donors. Fingers crossed that one of them will be your match!!!! Love you bunches.

  9. Our prayers go to you and your family. Harry, my middle child beat cancer not too long ago. We may not know your struggles but we do understand them. We will be thinking of you.

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