Longevity for Lily

$1,060 of $35,000 goal

Raised by 14 people in 22 months
Hello Everyone! As we hate to ask for any help like a lot of people, here we are. We were prepared in our lives for 2 children, small 3 bedroom home, and a normal life. What we weren't prepared for was Lily's diagnosis. She was diagnosed with SMA (spinal muscular atrophy). our needs began to change immediately. Our small house has become even smaller, with all of Lily's medical equipment, wheelchair, etc. Our dinner table is now gone to make room for her equipment. We will post a video within the next few weeks to show the daily struggles we face with Lily being able (or lack thereof) to move about the house in her chair. We are in a desperate need to move to a place with a more open floorplan to keep her mobility and independence as normal as it can be. With both of us working full time we do not qualify for any kind of help to relocate. Also with all of her medical bills its impossible for us to put much back to try and relocate.  Any little bit helps as each day that goes by and Lily get older her chair will eventually get bigger and the issues will be even greater. Thank You for reading and any support !16230900_1536459181331668_r.jpeg
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Hello Everyone! As we hate to ask for any help like a lot of people, here we are. We were prepared in our lives for 2 children, small 3 bedroom home, and a normal life. What we weren't prepared for was Lily's diagnosis. She was diagnosed with SMA (spinal muscular atrophy). our needs began to change immediately. Our small house has become even smaller, with all of Lily's medical equipment, wheelchair, etc. Our dinner table is now gone to make room for her equipment. We will post a video within the next few weeks to show the daily struggles we face with Lily being able (or lack thereof) to move about the house in her chair. We are in a desperate need to move to a place with a more open floorplan to keep her mobility and independence as normal as it can be. With both of us working full time we do not qualify for any kind of help to relocate. Any little bit helps as each day that goes by and Lily get older her chair will eventually get bigger and the issues will be even greater. Thank You for reading and any support !
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Lily update!!! Lily has recently received her 5th dose of Spinraza! Although she is gaining strength, her future needs are terrifying. As we know a power chair is not a medical necessity, we very much want Lily to have as normal of a childhood as possible. We were quoted at $40,000 for a power chair, her current manual chair was over $10,000 as scoliosis is a problem for SMA kids, so the chairs are made to give snug support. We are so greatful for all the kindness, support, & prayers from our friends, family, community, & even from those we have never met. Lily's future needs are quite scary, although it is very hard to ask for help we have put our pride aside for the well-being of our precious Lily.
Lily loves life, she is overall a very happy little girl
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We are so grateful for all the support we have received since Lilys diagnosis. Currently our new need for Lily is a mobile Chasis for her stander. She is not wanting to spend much needed time in her stander due to it being stationary, she is a normal 2 year old who wants to explore & get into mischief. Lily maneuvers great in her wheelchair but she would receive so many benefits of standing as much as possible. There are several health benefits to standing. Increased bone density, increased respitory function, bowel & digestive health, & help to prolong developing contractures. We are currently looking at minimum $550 for the mobility part that goes to her stander. As we are finding out Lilys needs are going to grow as she does. Again thank6 for all the support we are so gtrestful. Love Lily & Family
Lilys current stander, mobility would increase her tolerance of standing
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Lily update Lily gas just finished her 4th & Final loading dose of SPINRAZA (injected via lumbar puncture). We will return to St Louis every 4 months for dosing. Lily is making so much progress she is more determined than ever to build her strength as she knows no boundaries. Follow Lily's progress on her FB page: Longevity For Lily. Thank You All so much
Through everything Lily continues to Smile Sing & Dance
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$1,060 of $35,000 goal

Raised by 14 people in 22 months
Created November 22, 2016
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$20
Laura Howland
14 days ago

Hope this can help u all out

AP
$25
Adam Peterson
9 months ago

Thank you Mom and Dad for introducing us to this amazing family! We are making this donation in your name!!! Merry Christmas!

$25
Kathleen Herrebout
9 months ago

Met Randy at Toys R Us in Orland Park. Wishing your family and Lily a wonderful Christmas and healthy/happy new year.

SM
$25
Susan Melhus-Lee
16 months ago

She is adorable!!!

DR
$50
Dave & Dee Roberts
19 months ago

Looking forward to meeting you!

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