Maisie has been severely low tone since 2 months old. She’s been doing physical therapy and occupational therapy to try and improve her strength since she was 4 months old.
After months of fighting doctors... we were admitted into Rocky Mountain Children’s Hospital to meet with a neurological team to deal with her strength issues and also an occupational team to deal with her feedings. She had quit eating when she was 5 1/2 months old. We were then transferred to Children’s Hospital Colorado to work with a neuromuscular team.
Maisie was unable to move anything but her right arm. She struggles to breath on her own especially when sleeping. She can’t sit up and she can’t swallow. SMA is evil.
It was confirmed on June 14, 2018 that Maisie has spinal muscular atrophy type 1. This is possibly the worst news a parent can hear.
We spent From May until January in Denver with our baby fighting for her life.
In this period of time, Maisie's family was separated, and out of work. They have now been home and able to start getting their feet underneath them and build some sort of normalcy. But not all Maisies medical expenses are covered and we surely don’t have enough for what they are calling the closest thing to a cure.
We are asking for the community’s help for:
The family is in need of financial support to be used for ongoing medical expenses, and expenses for Maisies future. We also want her to continue to receive spinraza the drug that has kept her alive. It comes with a price tags of 125,000 every 4 months. We are unsure if insurance companies will pay for both treatments. Again neither is a cure just treatment. Wouldn’t you do anything and everything to give your child the best opportunity to survive. we believe getting both drugs will give her that.
The support the family receives will be an immense help.
Any amount helps. Thank you so much for your thoughts, prayers and donations. Help us create another miracle for Maisie.
Please like her page Miracle for Maisie on Facebook! You can continue to follow her story there.
- Lindsey Donges
- Mark Lawler
- Clayton Hall
- Melinda Franke
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