Meet the Walkers- Bob, Crystal, Sara, Aliyah and Madelyn.
They are one of the most wonderful, positive, persevering families. Their two younger
daughters Aliyah and Madelyn have a rare
genetic disorder called Cystinosis, which
affects the kidneys and eyes. This has been a
journey for them as they’ve had to navigate
the medical system, government red tape and around-the-clock medication doses in
addition keeping the normalcies of life,
working and running a small business.
Recently, however, Madelyn had been
diagnosed with Moya Moya disease, another rare condition where her blood vessels at the base of her brain are blocked, resulting in
strokes. Treatment is Revascularization
surgery. In the fall, Madelyns condition
worsened and although there was a higher
risk of doing the surgery when she wasn’t
stable, the doctors felt they needed to do it
before she got worse. On October 8, 2019,
Madelyn had the Revascularization surgery
but she stroked on the table. This resulted in her waking up from surgery without the use
of her left side. Devastated, they spent many weeks in the Alberta Children’s Hospital
trying to regain access to things like her left
arm and leg and speech. They finally came
home mid November. She had a wheelchair,
could make a few assisted steps and had
started singing again.
Last week (end of November), Madelyn had another devastating setback and they are back in the ACH for an undetermined time. While she still has limited movement in her legs, her upper body access is extremely limited- a
couple vocal noises and requiring medical assistance eating and drinking. They are not sure what the future holds but they are looking at Madelyn having some significant challenges
in the future. She also still needs another
surgery but that won’t even be considered
until she is more stable, leaving her
susceptible to further stroke incidents.
Bob has exhausted his time off work but
desperately needs to be home with his family. One of them is always at the hospital with Maddie, while the other is trying to keep life as
normal as possible for the other two girls.
The pressure of making ends meet, finances
especially, is becoming a huge burden. The money raised will go towards their living expenses while Bob is off work.
They need help. They need to know they are not walking this journey alone. Would you
consider helping this beautiful family?