My name is Jennifer and I am fundraising for my beautiful daughter Lily.

Lily was diagnosed with Muscular Dystrophy in her first year of life. Specifically she has LAMA2 Merosin-deficient. I know plenty of people are not familiar with the Dystrophies as only less than 1% of the population in the United States are affected. It is a genetic mutation that makes it so Lily can not make muscles and over time any muscle she does have will deteriorate. That's all the muscles in our body our lungs our hearts our ability to swallow. Currently there is no cure. Prognosis in the best case scenario end of life will occur in her late 20's. If you are interested in more information check out the Muscular Dystrophy Associations Website. https://www.mda.org/

Cognitively Lily is typical. She is bright and funny and full of life. She is very social and loves to interact with others.

Every year I don't plan an amazing family vacation I plan to make her medical bills which at the age of 6 is some where in the range of $45-50,000 thousand dollars not including what we have paid monthly. This precious little girl has been through the ringer with hospitalizations and surgeries and ER visits. I need a lot more room to explain all of the complications that arise.

Like every mother I want her life to be full of love and laughter and opportunity. What I want for her are the things that insurance does not provide so that I can help Lily live her best life. Her first years have been extraordinarily stressful. I have been so blessed to have the love and support of my family. I have hesitated to do anything like this because honestly it's hard to ask for help. It's hard to grasp this diagnosis. It's difficult to share with others. But it's time to share and why not ask...

Lily has never been able to walk. She is getting her first power chair this year. It would be so great if we could make our home more accessible for her.

So here are the things I want for Lily and what I am attempting to fund through your generous donations. If you have resources for these things please share, I have researched everything I could find but can not find funding for these items as they are not considered medically necessary. If you have a prayer in your heart please share and thank you for anything you can contribute.

• $4500 - The portion of the chair that insurance does not cover

• $500 - A travel Carrier and Hitch install for the Power Chair

• $1500 - A pathway around our home using decomposed Granite

• $600 - Renovations to our bathroom for an accessible sink and touchless faucet

• 5,000 - An extension to our back deck so it is wide enough, a ramp so she can get down and an enclosed area to sit in (because she hates bugs, lol) Pictures just to give an idea.

• $1,500 - An outdoor mobility stroller so we can take her hiking

• $3,361 - Discovery Series Pediatric Trike so she can ride a bike with her brother and get some much needed stretching and exercise.

• $126 - Full Support Swing Seat because she loves to swing

• $430 - Flotation device for safety and mobility in a pool or lake