Caitlin Neely's Memorial Fund (Neely Family Fund)

February 8, 2019 Update:

"Dear friends, on Wednesday evening Caitlin died peacefully in exactly the way she wanted to. In the days leading up to her final moments, she was surrounded by a score of fierce advocates, both in person and from afar. Ember was able to cuddle her and they spent time playing the animal sound game via her speech board. Her immediate family was able to arrive in time to spend a few hours by her bedside before she passed.

The family requests refraining from sending condolences via text or email for about a week, but you are welcome to leave memories, wishes, and thoughts here.

A celebration of Caitlin’s life is being planned and more information will be posted here when it is known.

The support we received from all of you over the last two years was what got us through this, and I know Caitlin was incredibly grateful for everything you all did. Even the smallest actions had a huge impact on her quality of life and her ability to enjoy her family and friends during her limited time. In her final days she worked against the drain ALS had on her energy to make sure this could be communicated to all of you. Even those closest to her are amazed at the extensive network of people Caitlin had collected throughout her life, and you all were on her mind throughout this process and especially at the end."

Any memorial gift you'd like to give is graciously accepted to help the family transition to life without Caitlin, and support Ember's upcoming 2019/2020 preschool year starting in the fall.

My sincerest thanks for all who have helped through your gifts to improve Caitlin's limited time with her family, and daughter in particular.
Jenn

Original Story Below:
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Please read the latest update from December 2017! Our current target is to get to $20,750 in order to provide the family the $6,500 to meet their 2018 deductible.

Friends,

Our dear Neely family was hit with devastating news in January 2017 - Caitlin has been diagnosed with ALS. Tamara  and Caitlin are of course most heartbroken for their sweet 18-month-old daughter, Ember - but the logistics of ALS are pretty daunting. By all accounts it's a very expensive disease, primarily due to ventilation, home care and equipment.

They need help in several ways financially. First, Caitlin has already lost all function in her right arm and hand, and her right leg is in poor condition. She can no longer work her part-time job, and she was also the primary caregiver for Ember which won't be possible for much longer. They are navigating applications for disability and assistance but the approval process takes time. They have always been smart with their money, but have accrued some debt due to her health already and now with medical co-pays,  inability to work and childcare, things are going to continue to pile up.

Caitlin's path from here is not pretty - ultimately, the disease is fatal. ALS removes all motor function while leaving her cognitive faculties completely in tact. It's a brutal, awful and unfair disease. Their family will eventually need to move into a handicapped accessible home/apartment. Caitlin will be in a wheelchair and at a point,  will struggle to eat (swallow) and breathe and require home care and equipment. Childcare for Ember and home care for Caitlin will be needed so Tamara can continue full time work.

The bottom line is this: This family doesn't have nearly enough time left together.  The average prognosis is 3 short years, and not all of that is functional time. It would be amazing if the financial burden of this diagnosis could be lifted a bit so they can enjoy the physincally healthy time Caitlin has left with Ember and Tamara. Please consider a (generous) gift to help them!