Jovanni Family Christmas/ WHEELCHAIR

Jovanni Family Christmas/ WHEELCHAIR

From Deleted User

I am raising money for the most amazing child so he can finally get the wheelchair he needs. Please read the description about him for full details. Please help anyway possible and share this EVERYWHERE! He deserves it.

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Jovanni is a 4 year old boy with a rare genetic disorder. Jovannis genetic diagnosis is so rare that he is the only child to have his specific diagnosis. Jovanni has a Mosaic tetrasomy of 3q24-qter with a suspected secondary genome abnormality ( This is known as a dual genetic diagnosis) By name, this diagnosis doesn’t mean much, but it affects every system in his body. He has been diagnosed with congenital heart defects, spina bifida (and all that comes with it), chronic kidney disease, and a long list of other things. There is not a specialist in the hospital that we do not see and have a relationship with. He is also deafblind, severely delayed, and completely non ambulatory, which means he is unable to get around or perform self-care without assistance, and will likely need assistance for his entire life. He has had dozens of surgeries, and I still pray for the day I can say it is coming to an end. Now, all that being said, Jovanni is so happy, easy going and loving, and spreads so much happiness everywhere he goes. Jovanni also has two brothers, with no health issues, who are typical developing kids. Jose, who is 11, And Alejo who is 7. They are both excellent, supportive, and so inclusive of him. As a family, we are all learning ASL, as this is Jovanni’s primary communication and will be for the rest of his life. His brothers are so motivated to learn and try so hard to communicate with him. They help me with all his medical care (where appropriate) and always want to learn more about what is going on with him. They have both become more medically educated than some medical professionals I have met! Often, Jovanni spends long stays inpatient and it can be extremely hard for both, of his brothers as they worry so much about him but also miss their mom, and their normal lives. I try to go back and forth as much as I can, and try to give them a sense of normalcy, but it is never the same. They constantly have had to bend their wants and needs and have been so patient every step of the way. I am responsible for all of Jovanni’s care at home, which includes TPN, g-tube feeds, ostomy bag/dressing care, etc. and now, because of COVID-19 I am now responsible for providing PT, OT, speech (ASL), and ABA therapies. Zoom consults are all we get at this point. (I should note: I have no medical or therapy background) Through all of this, my kids are also learning fully remote this year, and both Jose and Alejo also require help with their zoom school often. I try my best and they are generally so understanding, though it kills me that someone is always left to wait. Overall, I have three of the best children I could ever ask for. Jose and Alejo understand how complex their little brother is and Jovanni gives us a happiness like no other, but is accompanied by struggles that are, at times, unbearable. His mother tries to work as much as possible, but we all know with what we just read that is basically impossible. The money raised is going to be given directly to the Colon family to provide the kids a Christmas they have never experienced and more than deserve. Ideally, I would like to raise enough money to not only provide the kids a great XMAS, but also take some of the burden off of their Mother Ellie, to pay for any bills that may be past due. With so many constant and unexpected trips to the hospital and doctors, UBER gift cards would be great as well. If you would like to send a physical gift, please contact me for address and it will be provided. I know everyone cannot donate and that is perfectly fine. If possible, it would be more than appreciated if you could possibly pass this along so your friends and family for me and SHARE, SHARE, SHARE. Thanks in advance and Happy Holidays!!!!!

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