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Old 04-26-2009, 05:25 PM   #1 (permalink)
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Default I'd like to start a non-profit

And I'm looking for ppl to help me!

As many of you know, I have two DD's with special needs. The elder one, Elisa, is three and a half years old She was born with a rare chromosomal translocation which has caused her to suffer from many difficult and disabling conditions. These include dysphagia (swallowing dysfunction), g-tube feeding dependence, refux/GERD, asthma, cleft palate, heart defects, other congenital anomalies, hearing loss, severe to profound developmental delays, non-verbal, autistic spectrum behaviors, autonomic problems, delayed gastric emptying, constipation, susceptibility to infections, facial palsy, low tone (hypotonia), Chiari type I malformation (brain stem malformation), central sleep apnea, and obesity. She is dependent on adaptive equipment, supplemental oxygen, and her feeding pump. She has spent a lot of time in the hospital and sees about ten different specialists.

The younger Eliana, was born with congenital cataracts in both eyes and has shown other symptoms such as central sleep apnea, nystagmus (abnormal eye movements), lethargy/sleepiness, reflux/GERD, constipation, and severe milk/soy protein intolerance. She is in the process of undergoing testing for various conditions. Genetic testing (chromosomes) are normal but I am seeing a specialist in metabolic and mitochondrial disease on May 1.

I also have two brothers with special needs. One brother is ten and suffers from epilepsy and severe allergies to medication. He has suffered developmental regression and possible brain damage as a result of a seizure that lasted nearly all day without stopping last year.

The other brother is nearly eight. A vaccine injury caused him to develop cerebral palsy and autism. He is low-functioning and non-verbal although he is actually very intelligent. His medical symptoms include seizures, severe constipation, reflux/GERD, gastritis, immune deficiency (improved on vitamins, minerals and a healthy diet), pica, ADHD, poor feeding, failure to thrive, very thin and a choking hazard.

I believe that all of these children could benefit from hyperbaric oxygen therapy. Please see this link about a little girl with mitochondrial disease, named Gracie: http://www.wisconsinhyperbarics.com/...ry_wpics-2.pdf
Just as doctors have done with my DD Elisa and my brother, they had given no hope for this child. Her parents were told to just enjoy the time they had with her. Hyperbaric oxygen therapy not only saved her life, but gave her back her functioning and quality of life as well!

I would like to purchase a hyperbaric chamber for my children and my brothers to use. They cost about $25,000 and are not covered by insurance.

Does anyone know a person in marketing or who has experience legally and above-board collecting donations for a cause like this?

Thanks, any help would be greatly appreciated.
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TTC baby #1 since 2002
BFP March 2005!
Elisa Mari Walcott born 11-14-2005
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Surprise BFP June 2007!
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Eliana Imani Walcott born 01-26-2009

Thank you God my struggle with PCOS is over!
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Old 04-26-2009, 05:36 PM   #2 (permalink)
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Have you seen this? http://www.fundable.com/ I wonder if it might be helpful to you.

I'm so sorry for all the struggles you and your family have had and I hope you can find a way to make this work.
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Old 04-27-2009, 02:03 PM   #3 (permalink)
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I just wanted to wish you the best of luck. I work in a group home with four female adults that have a wide range of disabilities.
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Old 04-27-2009, 05:32 PM   #4 (permalink)
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I hope it works out for you. Best of luck!
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Old 05-05-2009, 02:53 PM   #5 (permalink)
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Suzi - I have provided a link below that could possibly help. They are normally a great way to help aid children in obtaining a specific goal. For instance, one little girl with physical limitations wants to be a dr when she grows up so they help her to raise funds.

Maybe they would be able to help you as well. I wish you all the best with this wonderful endeavor. http://www.sunshinefoundation.org/
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