Help Baby Ezaias' family with medical and therapy expenses

My grandnephew, sweet little Ezaias Dewalt, still not a year old, has been diagnosed with a 2q24 chromosomal microdeletion (specifically 2q24.1q31.1), a condition so rare it doesn’t have a name. So far Ezaias has required a feeding tube but more concerning has already had four ambulance trips to the hospital because of epileptic seizures which have caused him to stop breathing. It seems certain he faces a future of many more seizures and ambulance rides. While there is no predicting future issues, babies born with this microdeletion typically develop later, including not learning to walk until between 4 and 8 years and possibly not being able to talk. For more information, this is an excellent reference: https://www.rarechromo.org/media/information/Chromosome%20%202/2q24.3%20microdeletions%20FTNW.pdf

Ezaias’s mom Sarah was a full-time student and was hoping to go back to finish her degree in occupational therapy once he could go into childcare. Obviously an OT degree would be immensely helpful in this situation, and we all hope with help she will be able to return and finish her schooling. His dad Davis just finished school as a full time student, but for the moment is only working part time so he can be available for emergencies and a never-ending series of medical appointments.

Currently physio, speech-language pathology and occupational therapy are covered for Ezaias, but that coverage will soon run out, and his doctors feel he will likely need all three for the rest of his life and, for the first few years, he will need them at least monthly, with each visit being somewhere between $100-150. Insurance covers some of his medication, but they are still paying about $150/month, and that price will increase as he grows and dosage increases, as meds are changed or added, and if new issues arise. Modifications will be needed for their house and the family vehicle, and eventually they are going to need respite care workers: typically the government will subsidize up to $18/hr for 8-40 hours/month, but given his needs and the extra training they will require there will be a lot of money coming out of pocket for this.

Since August Davis and Sarah have spent about $4000 and can see as he grows and requires more adjustments to his surroundings and the people needed to help that they will need at least $20,000 for the next couple of years until Davis is settled into a career and they can more easily cover things. Let’s help Ezaias grow into the young boy he will be with the love and care to make that journey as straightforward as it can be for him and for his devoted parents!