The Momentum of Life: Local non-profit matches adaptive gear with children who need it
WASHINGTON (ABC7) —
Children’s National Medical Center physical therapist Claire Wong uses years of hands-on experience to improve the lives of children with disabilities.
Early one weekend morning we were there as she worked with 2-year-old McKayla Preston. McKayla is working on skills that will allow her to one day walk.
“Ok, want to sit? Want to sit? Down, down sitting there we go," instructs Wong.
But there’s something you don’t see on this mat that has helped this little girl make remarkable strides.
Wong says to McKayla, “There you go. Beautiful job.”
McKayla has Angelman Syndrome: a rare neuro-genetic disorder that causes developmental delays, poor coordination and difficultly talking and walking. McKayla will likely require life-long care, but with property therapies children with AS can, and do, lead fulfilling lives. In fact, McKayla is pushing herself to greater independence.
McKayla’s mother Laura Preston says, “She’s all over the place now. She’s not walking but she’ll lay down on the ground and then roll over and then sit back up again and recently she’s been scooting on her bottom. So, she’s very curious and she’s very interested in the world around her and before she was just kind of in her own little bubble.”
Preston adds, “It has been unbelievable. We have made so many strides since starting here.”
To understand McKayla’s recent, striking progress head to a piece of equipment in the corner of the room. It’s called a gait trainer. It wouldn’t be here for McKayla without her physical therapists unbending will and admirable hustle outside this rehabilitation center.
Claire Wong is a recycler of the essential tools of rehabilitation that allow children to go more places, do more and be more.
On this day, we followed Claire to several homes in Northern Virginia as she picked up equipment parents donated to her organization called Equipment Connections for Children.
Wong says, “We’re going to deliver a walker today, pick up a broken stander, deliver a chair, kind of a little bit of everything.”
Wong says far too many families can’t get from insurance companies, in a reasonable time frame and for a reasonable price, adaptive equipment vital for their child’s development. And she adds, for many of her clients there’s not a lot of money left over after paying for mandatory items like medication and a wheelchair.
“But if the insurance company purchases the wheelchair it’s not going to purchase the stroller and again you are talking another $3,000 to buy a stroller,” says Wong.
Like the top of the line stroller she picked up at one house.
Wong says enthusiastically, “This item is gorgeous.”
Her non-profit matches the right adaptive gear with the right child at no cost to that child’s family. She says parents are often desperate for these items because they are integral to their child’s literal growth, like a stander.
Wong says, “This assists them to stand. It stretches out their muscles. It’s teaches their bones that this is the right alignment. It prevents a lot of problems down the road, a huge number of surgeries, lengthenings, therapies and we’re helping them grow naturally and normally.”
For Claire, a stop at one particular home was very special. Equipment Connections gave a gait trainer to Dinorah Adams during a critical time in her daughter Paulette’s life. Now Adams is returning it.
Adams says after spinal surgery, her 16-year-old quickly needed a specialized gait trainer to relearn how to walk. But Adams says insurance approval for this $4,000 item would take at least three months.
“It was definitely not a time frame that we could wait in order to have a successful get and going for my daughter,” says Adams.
Well, Equipment Connections got it to Paulette in days, for free. Her mother says Paulette’s progress has been unmistakable.
Adams says, “We are really happy to see that there are people out there willing to help out the ones that really need in the time of need.”
All those donated items end up at the Equipment Connections warehouse in Gaithersburg where plastic wheels and lifeless legs come to life for another child like 3-year-old Genesis.
Genesis and her parents came by one afternoon to see if a special chair would fit hit.
“Oh what do you think? You like it?” Wong asks Genesis, who nods yes.
A chair, inconsequential to most of us, is critical to Genesis. She can’t walk or talk due to a brain tumor. A secure and comfortable place to sit, eat and play means everything for her quality of life.
On the same day Genesis got her chair Evelin came in with the assistance of her mother and older brother. Evelin, now 13, can’t walk or care for herself. She requires a specialized stroller.
Well, remember the one donated to Equipment Connections that Claire picked up a few weeks prior? It’s now Evelin’s new stroller.
“I can tell already she’s more comfortable. She’s better on this chair. She has more space and the other one she was not comfortable at all,” says her brother Orlando.
This stroller will also ease a physical burden for her mother who didn’t have the money to buy a stroller this nice. So, for years she carried her most places.
Orlando says to Claire Wong in the parking lot after packing up the stroller, “I’m being honest I’ve never seen a foundation or organization like this. You are really helping kids out there that need help. It’s amazing.”
Claire responds, “I’m glad you guys found us.”
Maybe Orlando’s joy comes from having experienced so much frustration. Which takes us back to little McKayla Preston.
Sure, she has her ups and downs. Sometimes physical therapy is a breeze. The day we were there it was a bit of a struggle. But almost immediately the gait trainer has allowed McKayla to progress. She’s moving more. And she’s now at eye level with her peers at school with has led to great strides in her social interaction.
“That’s a huge deal for us because we get to see her succeed at school,” says her father Tim.
McKayla also recently took her first steps, while in the gait trainer which her parents believe will be the catalyst for her to one day walking on her own.
Wong says, “She’s got a a bigger vocabulary so to speak on her movement patterns. Rather than having one choice she has three to four choices. This is huge.”
“It’s just amazing. As a mother, it’s fantastic to see her thriving in that way when we weren’t sure she’d be able to do that,” says her mother Laura who adds, “Seeing her make the connections that hey if I can stand and move I’m going to get a whole lot more out of life.”
Life is hard enough without having to face the unfairness of a genetic disorder. But in this moment, the momentum of a life for McKayla Preston has been forever altered, forever moving forward.