Savannah will be 18 years old in August. That's the longest time frame they have EVER given us. She continues to beat the odds. And continues to be her happy self.
In the next few weeks we will be going to the Boston Children's Hospital transplant cardiac center to see if anything can be done to help her besides transplant since she's not a candidate. They plan on doing a cardiac MRI and hopefully, we'll also get to see a doctor who is studying calcium channels as her disorder is a misspelling of a calcium channel- #CAMK2D
I got a loan for a van that I could change her diapers in order not to expose her to COVID-19 and with all the shutdowns- finding an open bathroom may be hard. (Camping potty for myself- sorry if TMI) So now our expenses are higher. We need to be able to pay for our trip to Boston.
Also I have to apply for guardianship this month. With COVID-19, I am running late. It seems it will cost approximately $1000. We don't qualify for free legal aid. I will share a photo of the letter in support of my guardianship from Savannah's pediatric neurodevelopmental doctor.
Right now, I am able to get Savannah in the van with a little difficulty. I need to get a seat lift to get her in on bad days. The only seat lift that fits my van is approximately $6700. Medicaid said it "might" pay $5000 of it. So I am hoping to raise money for the $1700 that we have to contribute.
If more money is donated than needed for both the trip and guardianship proceedings then I will use the money to pay on the van note or for repairs on it.
She's been through so much, but continues to be such a happy girl. I'm so proud of her. Thank you so much if you find it in your heart to give. Our main prayers are for her to have as little pain as possible to enjoy what time she has left. Please see her page on FB Savannah Shines https://www.facebook.com/Savannah-Shines-218191595045371/
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