Longevity for Lily

$890 of $15,000 goal

Raised by 12 people in 19 months
Lily Parlier was diagnosed with SMA Type 2 (Spinal Muscular Atrophy) on June 13, 2016.  It is a form of Muscular Dystrophy and a progressive disease.  Currently there is no cure or treatment available.  We were told she will never walk.  She has had and will continue to have constant therapies, medical equipment needs, and Dr visits from Peoria to St Louis to help her keep her stength where it needs to be.  We would like for her to have as normal of a childhood and life as possible. When she gets older her needs will change, such as a power stander/wheelchair, a lift put into our van as the power ones are very heavy, house modifications because our hallway is too narrow for her to be able to maneuver her chair in, her bedroom is too small for her wheelchair and her current/future equipment, and the bathroom she wouldn't be able to take her chair into, which would hinder her independence.  In order for us to be able to provide Lily the most normal, independent and best care, we have turned to the community and the public for help and support.  We both work full time and have a son Evan who is 5.  Any contribution would help her out tremendously and will be very much appreciated.  All money raised will go to Lily for her medical needs.   Please feel free to follow Lily's Facebook page Longevity For Lily we post pictures videos and updates as we want everything about and for Lily to be as personal as possible.  Always feel free to contact us with any questions.  Thank You, Randy, Tracy, Evan, & Lily Parlier
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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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$890 of $15,000 goal

Raised by 12 people in 19 months
Created November 22, 2016
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AP
$25
Adam Peterson
5 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
6 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
12 months ago

She is adorable!!!

DR
$50
Dave & Dee Roberts
16 months ago

Looking forward to meeting you!

SS
$300
Sujit & Bela Joshi Shrestha
17 months ago

Go Lily ! Best wishes !

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