Dylan endured 4 months in the NICU locally before he was discharged. Mom and Dad were home with baby Dylan, grieving the loss of his brother, when he coded during his nap. He was immediately rushed back to the hospital where he was transferred to the University of Michigan for another 2 months. Dylan finally came home June 2nd. Shortly after he was diagnosed with spastic quad cerebral palsy, GERD, chronic lung disease, epilepsy, and deaf in both ears.
Dylan has already endured 10 surgeries in his 7 years, countless pneumonias requiring ventilation, hip dislocations, and 24 hour supplemental oxygen.
On June 2, 2017, Dylan came down with the common cold virus that turned into pneumonia. After four days of treating the pneumonia at home he began to have horrible tremors in all four limbs. He would turn beet red and sweat profusely. He was rushed to the local hospital by ambulance and admitted to the ICU. Initial thoughts were that he was having continuous seizures. An EEG proved that theory wrong. After a week of no results with different medications, he was transferred to Indianapolis children's hospital. During transport, his hips were dislocated causing severe pain and he cried throughout the night. 12 hours later his respiratory status began to decline rapidly. He had to be immediately bagged and sent down to the ICU where he was ventilated. A chest x-ray showed severe aspiration pneumonia, which is assumed happened during transport because of the constant tremoring. Dylan ended up on high doses of strong pain medication and had to be paralyzed to stop his body from tremoring. These tremors were breaking down muscle mass and releasing a hormone that started to put him into kidney failure. The family was told to prepare for the worst.
After 12 days on the vent, Dylan was extubated and a certain medicine was found to decrease the tremors he was having. To this day they are not sure what even caused all of this. The theory is that the common cold virus spread to his brain and caused encephalitis. After 3 weeks in the ICU, Dylan was sent to the general PEDS floor and discharged 2 days later. One day after getting home Dylan’s lungs started acting up again, landing him back in the ICU locally. At this time, Dylan began to have what doctors are calling, neuro storms, he was discharged after a week in the local hospital on a new medication. After 2 days of being home, Mom and Dad knew something was terribly wrong. They couldn't console him. His vitals were through the roof and his fevers were reaching 105. They asked that Dylan be transferred back to Indy.
As of July 11th Dylan has been back in an Indianapolis hospital where doctors try to find a regimen of medications that will work to calm the "storms" Dylan is having. Sweet Dylan has been hospitalized for 12 weeks now. Mom and Dad are 3 hours from home and have a 3 year old and a 10 month old that haven't seen their parents together under one roof in weeks. The cost of being by Dylan’s side has become overwhelming. Maintaining a household plus travel expenses has depleted their savings. Mom and Dad had to make the hard decision to cut back on the time spent with Dylan at the hospital so that they are able to keep a roof over his head when he can finally come home.
Dylan will now need a tracheostomy, making the stay in Indianapolis another 4 weeks or longer. With the upcoming tracheostomy they will be required to be in Indianapolis for at least a two week training on how to take care of Dylan’s trachea.
Once Dylan is able to go home he will require at home nursing 7 days a week at a minimal cost of $1000.00 in which insurance isn’t picking up. With their savings already being depleted and the estimated outlook of still having to be hours away from home for the next month the financial burden is becoming too much to bare.
Dylan is a happy, loving, beautiful child that loves watching cartoons, especially Wallykazam!, Mickey Mouse Clubhouse, and Chuggington. You’ll hardly ever see Dylan without a smile on his face or laughing at the blank walls. He finds joy in the little things we all take for granted. Being he is nonverbal has its challenges but he has always expressed strength and resilience, overcoming any obstacle. Doctors said on many occasions Dylan wouldn't live to see his 7th birthday. Well, here he is, still going strong and proving everyone wrong. He is a blessing beyond what words can describe.
A note from Dylan’s mom, Melissa.
Any financial donations made in Dylan's honor would be greatly appreciated beyond words. We are currently spending at least $1000 a week to be by his side. That cost includes, childcare for our other kids, hotels, food, gas... We aren't ones to look for a handout, but we feel it would be detrimental to Dylan's recovery if we have to leave him alone for days at a time while in the hospital. He is the love of our lives and to imagine losing him is something we couldn't even fathom. We thank each and every one of you in advance for any support you can give us and our sweet baby boy. After everything he's been through he deserves to have all the love and care he can get while he's still in the hospital. We believe Dylan will overcome this hurdle as long as he has friends, like all of you, by his side as well. Dylan sends his love to all of you in appreciation for your kindness and humanity.
Melissa & Abe (and Dylan too!)
- Jennifer Steele
- Joe & Linda Bandieramonte
- Ed P
- Ann Adams
Organizer and beneficiary
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more