Our two younger daughters, Emma (4) and Ruby (17 months) have been diagnosed with a rare neuromuscular disease called Spinal Muscular Atrophy (SMA). SMA is a cruel, progressive disease that affects the voluntary muscles in their bodies. Every day, our beautiful daughters fight to do simple things that many people take for granted.
Emma is able to walk independently, but she uses a walker for distances greater than 20 feet. She falls frequently and is very easily fatigued. Walking up even one step is difficult for her.
Ruby's SMA is more involved than Emma's. Ruby can not bear any weight in her legs; she can not stand or walk. Ruby was able to crawl at 9 months, but her disease has progressed and at a time when she should be exploring the world around her, SMA has taken away her mobility.
Ruby can no longer move independently.
The past 18 months have been incredibly difficult for us. Emma was 3 years old when she was diagnosed and I (their mama) was 37 weeks pregnant with Ruby at the time of Emma's diagnosis. Just 10 too short days after Ruby was born, we learned that she too has the gene deletion that causes SMA.
Steven and I have done EVERY.THING. in our power over the past 18 months to help our daughters, all three of them. We have relocated back to my home-town (Jenkintown, PA), and purchased a home that will easily accomodate our daughters as they grow and fight this disease. We have built an incredible team of therapists who are wonderful people with creativity and hope, who've graciously joined us in our battle against SMA.
We do not know what lies ahead. But, we are determined to fill our daughters' lives with beauty, magic, and hope. For Ruby, right now that means giving her access to the world around her.
We want her to be a participant in life, not simply an observer.
We have researched and researched and talked to parents, therapists and doctors and we believe we have found the manual wheelchair that will change Ruby's world.
SMA affects all muscles in the body; because of that impact pushing a manual wheelchair can be incredibly difficult for people living with SMA. The wheelchair that we are hoping to get for Ruby weighs only 7 pounds and can be propelled with one finger; many children with SMA type 2 have been able to use the chair to move THEMSELVES around. The chair WILL change Ruby's life.
The chair costs $6000.00
And it will not be covered by insurance.
Please help us get Ruby into this chair. Steven and I have struggled with wether or not to ask for help financially, but with the trips out of state to specalists, the therapies not covered, the equipment pieces not covered, gas for all the to-and-fro, high heating costs (due to Ruby's inability to generate enough body heat), the extra hands we've had to bring in to help support the girls, and the upcoming house modifications we've landed in a place where we can welcome any support our friends, family, and community can give.
Our fundraising goal is set at $15,000 because in order to give both Ruby and Emma unobstructed access to our home we need to significantly alter our front entrance. The entrance is one step up. ONE STEP. But that one step may as well be a mountain for our daughters. We need to raise our entrance, to level the ground and put in a covered ramp. Our door threshold needs to be removed, because it, too, is an obstacle.
I am scared of what needs our girls will have that are not yet known to us and how many times we'll need to reach out to our incredible network for help and support. But I am also grateful that today's biggest challenge is one we CAN FIX!
Many of you have already given on our family's behalf and we are so deeply grateful. The love, support, and care you have given us has held us up and given us strength. Thank you for every drop of help you've given, we are incredibly grateful...
With love, light, and gratidude,
from gina, steven, mabel, emma, and ruby.
DonationsSee top donations
- Maureen Bell
- Nikki Barnes Atkinson
- John Schott
- Kim Perri-Medini
- Kim Perri-Medini
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more