Ingram Family – Kidz Express Honoree Spotlight
Jawonio is thrilled to honor the Ingram family at this year’s
12th Annual Kidz Express on Thursday, May 2nd, 2019!
The Ingram family came to Jawonio when their daughter Chelsea was an infant. Alyce and Kevin, Chelsea’s parents, knew she had challenges from the beginning.
Chelsea was born full term at 8lbs 9oz, but due to her problems with swallowing, she was unable to feed or gain weight properly following birth. She would exhaust herself, and never finished even the smallest bottles in the nursery at the hospital. She was also presented with a number of other issues that the doctors were unsure about.
“They kept her at the hospital for a few days to observe her, and she was discharged to home for a couple of days, but with her problems sucking, we knew she wasn’t getting enough…we were very worried about her losing weight and she didn’t look good,” said Alyce.
She was admitted to Nyack Hospital because of dehydration, and had to stay for two weeks before being transferred to Westchester Medical Center to see a Geneticist. They wanted to rule out various medical issues, because at that moment, the doctors did not know what condition she had. It was a scary time for Alyce and Kevin.
Thanks to a chance meeting between one of the Geneticists at Westchester Medical Center and another doctor at a professional conference, they were finally able to make the diagnosis when Chelsea was 9 months old. And at 11 months, she had neurosurgery. Chelsea was born with a condition called “Costello Syndrome” which is characterized by a number of medical issues and characteristics including; hydrocephalus, hip dysplasia, problems swallowing and feeding, among others. There are only 300 children worldwide with this condition so there is very little information available. Neither her parents, nor the doctors were able to identify this until after months and months of testing, hospitalization and surgery.
Pictured above, Chelsea as a baby with mom, Alyce and dad, Kevin.
“There was a real turning point for us when the specialists taking care of Chelsea said she would be severely ‘retarded’, which was devastating to hear. Thank goodness for Dr. Bloom, her Pediatrician, who asked us if we would treat her any differently, we remember his exact words ‘you’re going to push her to be the best Chelsea she can be, don’t let other people put limitations on her’. Dr. Bloom gave us the perspective we needed. To this day we don’t let anyone put restrictions on her or tell her what she can’t do,” says Alyce.
Dr. Bloom, her Pediatrician, referred Chelsea to the County for Early Intervention Services and that’s when they came to Jawonio and met Joan Maurer, Program Director for the Infant Development Program and Jerry Staller, Division Director for Education and Clinical Services. Joan was the first therapist that Chelsea saw for her speech and swallowing issues. Chelsea hated having OT (Occupational Therapy), she didn’t like anything to touch her hands. She cried so hard sometimes that her face turned purple and the therapist would end up stopping the therapy and cradling her instead. Chelsea had to have an NG tube for feeding until she was 18 months old, but she pulled it out a lot. She was finally able to handle solid food when she was about four years old.
The therapists at the Jawonio Infant Development Program and Preschool worked and pushed Chelsea to get her walking, talking and eating. She did resist sometimes and so the therapists had to get creative. Chelsea’s first step happened in the main building right after a therapy session. She was walking with her walker and the therapist apparently pretended to fall down so Chelsea left her walker to run over without assistance to try to help him get up. The strategy worked and she walked on her own!
Chelsea at the Jawonio Preschool.
Alyce, Kevin and Chelsea Ingram with Jerry Staller who received an award from the Haverstraw Little League at the Tournament of Champions in 2016.
As she grew, Chelsea transitioned from the Jawonio Early Intervention Program to the Jawonio Pre School and then on to West Haverstraw Elementary school. She spent summers at the Jawonio Summer Education Program and in high school she got involved in Project Life. She also got involved with the Haverstraw Little League, and played T-Ball. She tried playing with the Challenger Little League but did not like it that they didn’t use strict little league rules and moved over the HLL soon after. Chelsea’s dad, Kevin, had been coaching at the Haverstraw Little League for a few years at that point and still does today. Kevin got involved with HLL when he was recruited by Tom Zugibe in 1995 and he’s been there ever since. Alyce, Chelsea’s mom, joined the Board of HLL in 1999 where she still serves as a board member. Alyce is a native of Rockland County and she, Kevin and Chelsea live in the home where Alyce grew up.
Today Chelsea is 26 years old, and involved with Meals on Wheels, helping seniors with chores, washing dishes and shopping. She is also involved with her church and helps out at the Haverstraw Little League field during the season. “Chelsea comes with me to travel games to cheer on the kids, it is great quality time we get together because we both love the game,” says Kevin. Both Kevin and Alyce both say that Chelsea has always been concerned and wanted to help others. In school when she saw other kids having conflicts, she always tried to help, or she would go get an adult to help resolve it. If a kid was new she would help them out and show them around. Chelsea has faced many challenges in life, but doesn’t let that stop her one bit. “She is fiercely independent, and a very kind and caring person,” says Alyce. Last year, she tried to apply for a job at a local business, but when she went in to ask for a job application, she was turned away by a worker who was not well educated in inclusion or how to speak with people with disabilities.
There was a meeting with the business, that Chelsea arranged through the Haverstraw Mayor’s Office, and all Chelsea said she wanted from them was to help the person she dealt with to “learn to be nicer to people”. Chelsea and her family are an inspiration to us all.
Get your tickets today to join us as we celebrate the Ingram Family at the Kidz Express.