Helping Bexley - 18q Distal Deletion

A Helping Hand for Bexley Wallace with 18q Distal Deletion
 
We first met Bexley’s mom when she cleaned our teeth. We didn’t know about Bexley at the time, but we did know that her mom, Sydonie, cleaned a mean tooth. And she made us laugh, which isn’t all that easy to do when one's mouth is wide open and you're staring at a ceiling. Later in the year, when Scott's dad, who has Alzheimer’s Disease, needed a cleaning, it was Sydonie’s fun, light-hearted demeanor that put him at ease.  We quickly became Sydonie fans. Still, we had not heard Bexley’s story.
 
Gradually, over each of our next few cleanings, Sydonie shared the details with us…
 
On May 3, 2018, beautiful Bexley Faye Wallace was welcomed into the world by her proud parents, Sydonie and Jason. She weighed just 5 lbs. 11oz., but from the get-go she showed a ton of spunk and a loving nature.



Very soon after her birth, Bexley’s doctor recommended that she have two tests performed. One of these was a karyotype test, which focuses on a baby’s chromosomes. The results came back showing that little Bexley was born with Chromosome 18q-syndrome, a rare chromosomal disorder in which there is deletion of part of the long arm (q) of chromosome 18. Associated symptoms and severity of the disease vary greatly, but the bottom line is there are a lot of them, and they are serious.
 


In less than two years, Bexley has experienced mild to moderate conductive hearing loss, for which she wears a baha cochlear headband hearing aid. She has growth problems, delayed development, and severe acid reflux. The valve between her two right heart chambers doesn’t close properly (tricuspid valve regurgitation), so blood flows back into her heart’s upper right chamber. Occasionally her eyes make repetitive, uncontrolled movements, the result of a condition called nystagmus. When it happens, this reduces her vision and depth perception, which affects her balance and coordination. To aid in walking, Bexley wears braces on both of her feet. Simply breathing can also be difficult for little Bexley, the result of a congenital softening of the tissues of her larynx (voice box) that has left the structure above her vocal cords malformed and floppy. Known as laryngomalacia, the condition causes the tissues to fall over the airway opening and partially block it. There’s a good chance she could require surgery for this as she grows. She may also need surgery in the future for another condition called submucosal cleft palate, which caused the roof of her mouth to not form properly when she was in her momma’s womb.



The good news is that young Bexley is quite the fighter, having endured nearly constant procedures for such a little gal. There have been CT scans of her head to evaluate narrowing or closing of her middle ear canal, for which she will most likely need surgery around the age of four or five. She’s had chest x-rays to evaluate her lungs for respiratory distress caused by the laryngomalacia. She’s needed two upper and lower endoscopies, four silent echocardiograms, and an EEG. Every three months she follows up with her doctors for evaluations. Her physicians include specialists in genetics, pulmonology, cardiology, audiology, ophthalmology, prosthetics, orthotics, gastroenterology, and ear nose and throat. Currently, she has physical therapy twice a week, speech therapy twice a week, occupational therapy once a week, and the family is working with a sign language instructor.
 
On Feb. 10, 2020, just under three months from the day she’ll turn two, little Bexley will undergo open-heart surgery. At this point, her parents aren’t sure of the exact amount, but the cost of the procedure ranges from $92,959 to $213,803. Her doctors say she’ll need further open-heart surgeries because her subaortic membrane continues to grow.
 


As you can imagine, all of this has taken a toll on Bexley’s tight-knit family. Sydonie’s seen her hours cut back at work, the result of the amount of time she’s missed due to hospital stays, doctor visits, and therapies. Jason, whose dedicated work ethic has allowed him to excel throughout his career, has had to take a step down in his company because of the amount of time needed for his job. And their son, Briggs, sometimes takes a back seat due to the circumstances of his baby sister. Swamped by what at times seems like endless medical bills, Sydonie and Jason have spent countless hours filling out paperwork for special needs and financial help.



In 2018, Bexley’s medical expenses were $25,968. In 2019, the total was $73,898. Sydonie estimates that it would take days to add up the family’s out-of-pocket expenses, which grew significantly after their insurance company denied a claim for Bexley’s foot surgery - the company considered the operation to be cosmetic.
 


It was at this point that we realized just how much the Wallace family could use a bit of help. So, we’re asking all those who are moved by little Bexley’s story to consider donating whatever you can to make a difference. Any amount will be a big relief to these kind, good-natured people, as even the smallest donation can go toward necessities such as food, gas, insurance premiums, and many other daily expenses. Of course, their biggest expense is the cost of making Bexley’s life as absolutely awesome as it can be, and that comes down to big-time medical bills.
 


Bexley and her family certainly have challenges ahead of them, but the grace-under-pressure that they’ve consistently shown indicates that they’re strong enough to weather the aches and pains. We ask that you help make this just a little easier for them, regardless of the size of contribution. Little Bexley could use the hand.
 


Here are few ways you can help:
 
1)    Give whatever you can. No donation is too small.
2)    Share Bexley’s story on social media.
3)    Email this page – gf.me/u/xa7f33 – to your family and friends.
 
For more information on 18q Distal Deletion:

•  rarechromo.org
•  ghr.nlm.nih.gov
•  rarediseases.org
•  chromosome18.org


With gratitude and love,

Scott and Lisa Smith