“Marleigh’s journey with a rare disease started when she was diagnosed with FPIES in February 2021 at 6 months old. FPIES stands for Food Protein Induced Enterocolitis Syndrome. FPIES isn’t your typical food allergy, it’s a non-IgE-mediated immune reaction in the GI system to one or more specific foods. Unlike most food allergies, FPIES reactions are delayed and usually begin several hours after ingestion of the caused food. 80-90% of children diagnosed with FPIES are likely to grow out of this by the time they turn 3. When Marleigh was first diagnosed, she was taking breastmilk and went through 3 different formulas before finding Elecare. Marleigh has many triggers and not very many “safe” foods. The hardest part about this journey has been not knowing what your child can and cannot eat and the only true way to find out is by trial and error. She’s currently 2 years old and we’re still having a hard time finding her safe foods. However, I’m hopeful that the end is near and she’s able to eat foods like other kids her age without having to worry having a reaction.
Recently, she was diagnosed with another rare disease, Blount’s Disease. Blount’s Disease is a disorder that affects the growth plates around the knee. The disease causes the growth plate near the inside of the knee to either slow down or stop making new bone. Meanwhile, the growth plate near the outside of the knee continues to grow normally, which causes bowing. Blount’s Disease affects less than 1% of the population. We’ve watched Marleigh struggle with walking, running, and climbing since she was 15 months old. She’s currently in KAFOs 16-24 hours a day. While Marleigh is far from completing the treatment for Blount’s Disease, we’re hopeful that with every day that passes that Marleigh’s legs will continue to become straighter and simple tasks such as running and walking will become easier for her as she progresses in treatment.
Marleigh is such an amazing little girl. She has had to deal with so much since birth. She’s extraordinarily fierce and tenacious with a personality that could outshine the sun. She’s so funny, and she likes to steal the show as soon as she walks into the room. Marleigh brings so much joy to everyone around her.
I can’t thank the staff at The Kidz Club enough for all they have done and continue to do every day for Marleigh. The nursing staff have made it so easy to not have to worry about her as much during the day when it comes to the feeding difficulties and the challenges she faces with her legs. Marleigh adores the everyone and is always so happy and excited to see them in the mornings. We’re forever grateful for each person that has been involved with Marleigh and her care.”
-Brooklyn, Mother
