**Updated January 21, 2016**
Lucy's life has changed dramatically since her addition was built. Over time, her respiratory strength declined - as is the case with SMA - and last October she had surgery for a tracheostomy. She is doing well, and the trach has made life much easier and more comfortable for her. However, because of her size, and the fact the trach is a bit more delicate than her bipap, we are in need of a new change in her life... a van!
Currently, we have a van with a lift and layout that is not compatible with her chair, which has to lie flat. We have lifted her into the van and onto the back bench seat since she was just over a year old, strapping her in with a special harness. Fast forward five years, and she is a large six-and-a-half-year-old girl who is all dangly arms and legs - and now with a trach that must be carefully balanced and held during transfers. Lifting her and carrying her into the van has become harder on us, and more dangerous for her. She is nearly the length of the bench on which she lies, and her stroller is heavy with machinery, making it harder with each passing year for her dad to lift into the back of the van.
We have found what we think will be a perfectly suitable used wheelchair van, currently owned by another SMA family. We are hoping to purchase this van ASAP! Plans were to wait until we received our taxes and take out a loan for the remainder, but this opportunity arose, and the value for the van they're offering is great ($13,999!), so we're hoping to jump on this opportunity! Any donations toward Lucy having a safe mode of transportation are greatly appreciated!
Five years ago, my husband and I purchased our first home. It was - is - a fixer-upper. We were just starting out in life, and figured we could fix as we went. When we plan, God laughs :)
A little over a year later, we welcomed our first baby into the world. Lucy is everything her name makes her out to be - our little light. Our dreams for our little family changed when Lucy was diagnosed with Spinal Muscular Atrophy (SMA), type 1, at 3 months old. SMA type 1 is fatal before the age of two 90% of the time. There is no treatment, no cure. Lucy cannot talk, cannot swallow, cannot cough, cannot breathe on her own for a full day and night - much less sit, stand, walk, or ride a bicycle. As the body weakens, the mind stays sharp. Lucy is a very sassy, goofy - albeit completely immobile - almost 4-year-old. To see a little more of Lucy's personality, you can visit our Youtube channel here
. To read about living with SMA, you can visit our blog here
The house with the old claw foot tub and clearly defined rooms that once held such appeal is now hampering our adjusted lifestyle. As Lucy gets heavier and longer, her joints get weaker and more prone to dislocation, bones are brittle and easily snapped, and on days when her secretions can get the best of her, she cannot be lifted for more than a second or two. She is the length of the tub - the one place where she has a little freedom of movement, when suspended in the water. Her bedroom is on the second story of our house, which means a trip up and down the stairs at least once a day. She can tolerate it now, but as she gets heavier and limbs get longer, she gets more fragile to carry, and we are risking her life with each trip we take.
I quit my job when we knew something was seriously wrong with Lucy, to stay home and provide her full-time care. Her father works, and carries the insurance that pays for most of her medical needs. Something insurance will not cover, though, is home modification.
A unique opportunity recently arose for us: the house next door, which was completely decrepit, was purchased, gutted, and renovations were started. An electrical fire during renovations destroyed the empty house (which was a terrifying ordeal for me, who was home alone with Lucy at the time,) so the owner is selling the lot. We would love nothing more than to purchase the lot and build out our first story to include a bedroom for Lucy that will adequately store all of her machines and medical equipment, a handicap-accessible bathroom with an extra long tub, and a bedroom near her for ourselves. I sleep most nights in Lucy's room, but having my husband only a few feet away in case of emergency gives peace of mind.
We cannot do this alone. I know that times are hard for all. We humbly ask that you give if you feel compelled to do so, and if you cannot, please share Lucy's story so that someone else might. We ask also that you keep our family and our goal for Lucy in your prayers - if this is what He has intended for us, it will happen! If not, we will do the best with what we have, and look for another opportunity to make Lucy's life as safe and full as we can.
Above: in her stander Below: on her breathing machine, feeding tube hooked up.