Jeff and Amanda Carver are the loving parents of two sweet children, 3 year Kayleigh and 2.5 year old Hayden. The Carvers noticed at very young age Hayden wasn't meeting his milestones and expressed their concerns to his doctor. He battled constant viral infections, diarrhea, constipation, and weight loss, and at the 4 month appointment, Hayden was still wearing newborn clothes, had no head control, and was very floppy.
After many doctor visits and much genetic testing, on January 3rd 2012, Amanda got the call telling them that Hayden has an extreemly rare disorder called 17q25.2q25.3 Duplication 17q25.3 Deletion. Only 20-25 people worldwide are known to have this disorder of the chromosomes. He also has Hypotonia, FTT, Developmental Delay, Gerd, Gastroparesis, Pseudopapilledema, Left Pulmonary Artery Stenosis, Reoccurring Infections, Central Apnea, and Chronic Airway Disease. But even so, mom Amanda wants you know Hayden is the happiest baby ever. If he's not beaming something is wrong. He truly loves EVERYONE and is so innocent, with gorgeous eyelashes for days. She is a warrior mom who believes, "Hayden is here for a reason, to educate and make everyone smile".
We had put Hayden on our calendar for Spring after we got a few requests to help the Carver family this past fall, but we are moving them up because they need our help NOW!
On January 3rd, 2014, Hayden’s dad Jeff suffered a horrific accident, only a week and a half into a new job. Jeff was working on a roof in downtown Charleston putting sky lights in a building that Amanda, believes was vacant. As he was putting one of the lights in, his coworkers think he lost his footing and fell through the fiberglass. Jeff fell face first 27 feet onto a hard floor and tried to break his fall with his arms, probably saving his life. He did however take a lot to the right side of his face and skull. What is most heartbreaking is nobody saw him fall and it took about 15 minutes for anyone to find him. Thankfully he was working only 4 miles from the best hospital in the area.
Jeff, the family's sole breadwinner (since Amanda must give Hayden constant care) has left and right arm fractures, a left finger dislocation, multiple facial fractures, multiple skull fractures, a breast bone fracture, a vertebrae fracture, and a subdural hematoma. Amanda is worried about Jeff getting better but also what a financial toll this will take. They already have had some recent setbacks. They are living with Amanda’s mother, and were saving to possibly move to be closer to the Children’s Hospital of Philadelphia where all of Hayden’s specialists are, but that is now indefinitely on hold. This past fall Hayden was kept at CHOP for three weeks and Jeff’s employer at the time extended the time off, but when they returned he suffered appendicitis and was let go for missing too many days. They had been getting by and were hopeful as this new job was the first he had found in months.
Since the accident, Amanda has hardly left Jeff’s side. Her mother and best friend have stepped in to care for the children so she can focus on her husband. The doctors say there is no guarantee Jeff will ever be back the way he was before the accident. Since this was a new job, Amanda is not sure if Jeff would qualify for disability or worker-comp.
Ride to Give is eager to help this family. Hayden needs a new, better fitting wheelchair and car seat, a proper sized gait trainer with accessories, and a sturdy metal crib… all of which insurance has denied. In early February Amanda will have the first of 4 trips this year to CHOP for Hayden’s quarterly testing. Each trip roughly costs $1000 if they are only there a week, but more if they have to stay longer. On the practical side, Amanda would like to stay current on their bills, their car payments and car insurance. The Carver’s whole financial life is now upside down but the RTG Army can lessen Amanda’s burden so she can focus on what’s important… providing for her children and being by her husband’s side as he heals.
Please follow this brave family's updates at Hope for Hayden on Facebook.
