Help Dani with her Therapy needs

Dani was diagnosed with Turners Syndrome when I was about 14 weeks pregnant with her. If you are unaware of what Turner's is, it is a rare chromosome abnormality that 1 out of 2,000 girls are born with, basically these girls are missing one of their X chromosomes . Turner Syndrome has a list of all medical, and other symptoms these girls can have through out their life. Here is a link for more information regarding Turner's https://www.turnersyndrome.org/

Dani was born at CHOP needing to have open heart surgery at 5 days old for a coarctation of aorta, which was successfully repaired.   She also has a horseshoe kidney, which causes her to have UTI's a lot more then most people.  We also follow up with Endocrinology, Neurology, and the Neuro Cardiac Developmental Program, all at CHOP

One of the troubles we are facing now, is due to Dani always been developmentally delayed, Dani was also recently diagnosed with Autism. 

Danielle has therapy at school, and we also attend a private therapy location for intensive Speech and Occupational therapy . Currently we drive 30 mins. to and from (so an hour total) for Dani to get these necessary therapies. We do this 4 times a week, she also attends the Dani is very delayed on her speech, and has a lot sensory needs. We currently have a BSC and TSS who help us at home and work with her.   These therapies we are lucky are covered by our insurance and MA. 

However, insurance and MA can only go so far, and only pay for the minimum. Dani needs more than the minimum. 

In August, Dani will be participating in a feeding program at CHOP that is intensive for 4-6 weeks. This therapy will be focused on helping her get through her fear of trying new foods, eating, and behaviors she has while eating.  Dani has always had trouble with her feeding, she was on an NG tube for a few months when she was born, so it'salways been a battle for us and for her.  At the age of 3, she eats about 5 things now, and has been giving up more and more food. After speaking with other parents whose child has gone through this, we feel this is what Dani needs. 

Right now, our list of items we need for Danielle for therapeutic reasons, is growing and growing. After multiple attempts, I was told insurance and MA would not pay for a medical helmet (they are over 200), a weighted vest (that is around 80), and another helpful therapeutic item for Dani would be a therapy dog.

As Dani is growing it is becoming more and more obvious she needs these therapies, and also needs therapeutic devices such as a sensory swing, weighted blanket, an electronic device such as an Ipad for communication. As much as insurance and MA have helped us medically, they do not cover any of the above expenses, I have listed (and there are many more I could list). 

Before having Dani, both my husband and I worked, however, with all the medical and therapy appointments, I need to be with Dani almost 80% of the day, making it hard for me to work.  

This gofund I decided to create, for everyone who have always asked us what they can do to help, or what Dani needs. Dani needs these services, she needs these supplies. The money from this go fund me, will go to all the above mentioned, and anything else we may cross as she grows.  A

We just want to do what is best for our daughter, and give her whatever she needs in order to thrive.

Donations

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  • Dorothy Brockman 
    • $100 
    • 14 mos
  • Kathleen Wehr 
    • $50 
    • 25 mos
  • Schlack Family 
    • $100 
    • 26 mos
  • Laura Abrahamson Bauer 
    • $25 
    • 26 mos
  • Adriana Scotti 
    • $50 
    • 26 mos
See all

Organizer

Kristen Grasso 
Organizer
Oxford, PA
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