Join Noma's Village: CHARGE Syndrome Fund
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Hi! I am Stacey Bartholomew and would like you to meet my cousin Tom and his wife Parker and the star of the show and the light of their lives…their miracle daughter Noma Juelle, who will be 3 years old on June 30.
Noma was diagnosed with CHARGE syndrome, which is a rare genetic disorder characterized by a range of birth defects and health and developmental challenges including many heart issues, high arched palate, facial droop, ear anomalies, pulmonary hypertension and mutation of CHD7 gene.
- Noma is surrounded and supported by many health care specialists from Masonic Children’s hospital as well as a host of holistic health care practioners in the Twin Cities. Because insurance does not pay for the extra work of the holistic health care providers, this adds an extra financial hardship for Tom and Parker. The additional expertise of the holistic team has advanced Noma’s development and points to their importance. Examples of this: original hospital diagnosis for removal of G-tube was 5 years of age. Noma’s was removed at 2 years! Original hospital diagnosis for BiPaP machine was “years”…Noma was off in less than a year. Another integral part of their intervention was getting Noma to crawl, walk and talk when the hospital originally told them she may never perform these milestones.
Due to Noma’s developmental challenges, daily body brain exercises, specialized food with added supplements four times a day, doctor visits, and Physical Therapy, Noma is not able to attend Pre-school yet which means Tom and Parker must work from home and coordinate their work and watching Noma.
All of this is physically, mentally and financially taxing on both Tom and Parker. It truly does take a village to help raise our children and unfortunately Tom and Parker both lost their mothers in the past year to cancer. A huge part of Noma’s village is now gone.
Will you consider joining me in supporting “Noma’s Village”? This GoFundMe health care account is being set up to assist Noma and her parents as she works towards preschool this fall in the Bloomington Public Schools.
Your donation, as well as you sharing this with anyone that you might know that would donate, is truly appreciated.
Co-organizers (2)
Stacey Bartholomew
Organizer
Minneapolis, MN
Tom Johnson
Beneficiary
Parker Genne
Co-organizer