My name is Charvel Vizitei, and my nephew Lucas and his family could really use your help. Our little Lucas has had a rough first year. As many of you know, he was born with a very rare and unique genetic condition (MCAP) that causes his body to grow differently, and, as we recently discovered, caused his veins to develop very differently.
Lucas is 1 of less than 235 confirmed cases of MCAP in the world. Thanks to this most recent extended stay in St Louis Children's Hospital, we now know Lucas is also 1 of only 13 patients with this specific version of his condition. We know Lucas is amazing and unique, but he is also now an 11 month old experiment in modern medicine as doctors from around the US work to better understand his symptoms, challenges and an effective treatment plan.
On October 17th Lucas was taken to the ER at Women's and Chlidrens in Columbia Mo, because he had begun to spit up blood. The doctors soon discovered that his blood platelet count was very low making clotting very difficult. After a tense night and no answers, the doctors decided the best thing to do was to transport him via ambulance to St. Louis Children's hospital. There he was admitted to the PICU where he spent another scary week as doctors were unable to diagnose the problem and were only able to treat his symptoms with blood product and continued testing.
With the help of the hematology team, the genetics team and PICU team we were finally able to get some answers and a treatment plan. After a week in the Hematology unit at St. Louis Children's hospital, the treatment plan looks promising. Though he does have a ways to go before he - and his mom and dad - are able to bust out of the hospital. It's going to be a long road ahead full of unknowns.
Lucas will need to be on three very expensive medications (one of them experimental) for the foreseeable future, but hopefully those life-saving medications will be able to control his extreme bleeding, swelling and unusual growing patterns.
We are so thankful Lucas was transported by a team of medical specialists hours away to St Louis Children's Hospital, that he was able to undergo very extensive testing, receive excellent care in PICU and the Hematology ward, that Stephen and Amanda were both able to take the time away from work and their older son to be with Lucas as he faced his biggest medical emergency so far. However, these things all come at a cost - a big cost.
With medical bills mounting, costs of traveling and staying in St Louis, there is a difficult financial burden for Lucas's parents. Unfortunately the cost is only going to grow with the long term use of these drugs and the frequent monitoring and follow-up needed by the specialists at St Louis Children's Hospital. The Dunkin's give so much to people in their time of need, and I'd really like to give something back to this family in return.
Anything that you are able to contribute will go a long way toward Lucas's long term recovery in paying for the medical bills accrued in this hospital stay and the cost of his medication going forward. It will also give peace of mind for his family. Thank you so much for any help you can give!
Charvel Vizitei (Auntie Charbelle)
- Lois Dixon
- Thomas Jessen
- Chris and Lori Onstad
- Will Dunkin
Organizer and beneficiary