Accepting help isn't always easy. Asking for help can be even more difficult. This is most certainly one of those times for us. For those of you who don't know our family's background, please allow us to briefly explain. Boy met girl. They fell in love, got married, graduated college together, and started their own little family. Child #1 was born. Life was great. Child #2 was born. Life was still great. Child # 3 was born. The family portrait was now complete. With the soon-to-be option to add a second income, the student loans would quickly be paid off and comfortable living arrangements would soon be obtained. Everything was going according to plans. Life was still great. Or...so they thought.
As it turns out, 7 months later, child #3 was given a death sentence when she was diagnosed with SMA Type 1 (a genetic neuromuscular disease). We were told she'd be lucky to live to see her 2nd birthday, but we refused to stand idly by. With tear-filled eyes, we made a vow in that moment of desperation to fight for her life in every way we could, for as long as we could. And fight we have. Surgery after surgery, treatment after treatment, and sleepless night after sleepless night, we've stuck by that vow; including persistent around the clock critical nursing care. All with little outside help. As a result, we've been overjoyed to watch her not only continue to grow, but to thrive to reach her current age of almost 9 years old.
With the addition of Spinraza treatments that Abrianna's been receiving for the past 2 years, the progression of her disease has been stopped in its tracks. Not only that, but she's seen several small gains in muscle function as well. As of a few weeks ago, she became the proud owner of her very first power chair. The challenge that we now face is that outside of her bedroom (which is an addition built onto our single wide mobile home), Abrianna has nowhere within our home to drive her new power chair. Our original life plan included a much larger combined income and didn't include the need for a handicap accessible home. What was supposed to be our temporary starter dwelling, has proven an inadequate area to safely maneuver Abrianna's wheelchair stroller throughout; let alone an actual power chair. Aside from an occasional and challenging (due to cramped space) visit to our living room, she is confined to her bedroom nearly 24/7. Our original life plan included a much larger combined income and did not include the need for a handicap accessible home or expenses such as the ever-increasing out of pocket cost for medical/nutritional/cleaning supplies (that has already surpassed $400 a month and does not include any SSI benefits whatsoever).
We are in need of money to either finance an upgrade to our existing home by building new additions onto it or purchasing a fully handicap accessible home outright. The added space and mobility will prove invaluable to Abrianna and our entire family. For the first time in her life, Abrianna will be able to independently move about from room to room and improve her quality of life by increasing the opportunity for engaging in activity and interaction with family members and guests. We are asking for your help in any way that you can. No donation is too small. With our most sincerest gratitude, thank you in advance for any assistance you might be able to offer!