Change Lucy's Life!

$21,265 of $90,000 goal

Raised by 144 people in 71 months

**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!

 

Previous campaign:
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.
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Hello, loyal supporters! The generosity you showed when donating to our addition campaign has become more valued with each passing day, especially after Lucy became bipap dependent, and subsequently received her trach. The addition allows Lucy to be mobile in our entire downstairs, which is greatly appreciated by her and by us!

Since her trach surgery, and with her growing even more rapidly after the surgery, our need for a suitable van for her has become urgent. Lucy's size and fragility demand that she be able to travel in her chair, without the transferring and carrying in and out of the van, like we currently do. She will also be receiving a bigger wheelchair in the spring - one I don't think will even fit in the back of our current van. Another SMA family is selling their van, at a great value, and our hope is to be able to purchase from them! If you would like to contribute to this goal, we would be so thankful! We are also grateful for prayers for everything to fall into place as we look for safe transportation for Lucy. Thank you for always being there for our family, in so many different ways!
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I also wanted to add some recent photos of Lucy. She had one day of school before she became sick; I'm hoping that we'll be able to get back into the swing of things next week! She's been feeling perkier during the day, but seems to tire easily yet, and we haven't gotten the junk completely cleared out. It's unfortunate what a "little cold" can do to her!
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Hello all! I'm sorry it's been so long since I updated this page; it's been a hectic summer! Our house has been in complete disarray during the construction, and I'm scrambling to finish everything for Lucy's new space.

The estimate ended up coming in at just over $97k, and we had an additional unexpected expense when the plans for the original tub were changed. We did have a greatly successful rummage sale over the summer, headed by our friend Marjorie and a crew of fabulous helpers, which raised close to $1,000!

However much we end up raising in the end, we will make these payments work - we kind of have to; the building is already here ;) We're hoping to be able to move in during the end of September. It can't come soon enough - Lucy has been sick for almost two weeks, and while we've been incredibly blessed to be able to avoid the hospital, she's been isolated to her room, as she can't make the trip up and down the stairs safely. She also finally had her first bath in that time frame yesterday - with the new shower in the addition, we won't have to worry about safely bathing her when she can't control her secretions!

With every dollar donated, every share, every prayer, you have done an incredible thing - you have quite literally changed the way Lucy will be able to live her life. It will be monumental. Words can't express how grateful we are for all of you, or how grateful we are to have been working with the contractor, subcontractors, and suppliers that we have been. They have been kind, and not only accommodating, but have bent over backwards to make this project doable for us.

We still have some time before the big reveal, but here are a couple of the addition elements that will have the biggest impact on Lucy's life!
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Hello friends! Even though it's not particularly warm around here... or sunny... spring has sprung! We've been setting up appointments and making plans, turning in paperwork and choosing details - and it sounds like we will hopefully break ground in a couple of weeks on Lucy's addition! We don't have the final estimate in, but our contractor thinks it will come in a bit over $90k. We are applying for the loan for that amount, and will need to make up the difference. We are going to continue fundraising through the building process, and are so very grateful for any last-minute donations!

There is no way that we'd be able to do this without the generosity from all of you! Lucy seems to have had another growth spurt recently, and is even more cramped in the tub. With all of the gloomy, rainy weather this spring, it's harder for her to control her secretions, which means some days we can't get her safely downstairs. This addition will put an end to all that! You are truly changing Lucy's life, and we couldn't be more thankful.
Lucy in her too-small tub; not for long!
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Read a Previous Update
Candice Azzara
69 months ago

What a loving smile.

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$21,265 of $90,000 goal

Raised by 144 people in 71 months
Created April 8, 2013
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KT
$25
Ken Tucker
24 months ago

Good Luck Lucie

$25
Lori Lasee
24 months ago

Hope Lucy's dreams come true! We love you all!

$50
Anonymous
26 months ago
$25
Anonymous
36 months ago
KM
$100
Karyn Merkel
37 months ago

Love to all.

$100
Anonymous
37 months ago
Candice Azzara
69 months ago

What a loving smile.

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