I am trying to raise the funds to get my son to the Barth syndrome conference this summer so he can see specialists
Occupation:
stay at home special needs mom
Religion:
Christian - other
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My URL: http://www.microgiving.com/profile/kristip Offline |
Member Since: 02/28/10 | Login Count: 111 | Profile Views: 1095 | Last Login: 08/31/10
Biography
I am the mother of two boys, Justin and Christopher. My youngest son was born with a rare heart condition which gave him less than six months prognosis. He was a hospice patient for 15 months when he made an unecpected improvement (a miracle from God) and was discharged. 3 weeks ago we found out that his condition was caused by a rare genetic disorder called Barth syndrome. This being an orphan disease, it is very scary when he is sick 9which is a lot) and the doctors do not have any experience dealing with this where we live. There is going to be a barth syndrome conference this coming summer and it would be really helpful if I could get Christopher there. There is no regristration fee or cost for the evaluation by specialists, but since I cannot work because of all the doctor's visits (genetics, cardiology, pediatrics, immuneology, endocrineology, speech therapy, occupational therapy, nutirisionist, etc.+ many unecpected ER visits) It is also hard for my husband to work normally because he has to take us we only have one vehicle. anyway, I need some help with the cost of this trip, like a rental car, lodging, and living expenses. i could bring this valuable information home to Christopher's doctors and we can also benefit from the support and experiences of other affected families.
Here is a link to Christopher's caringbridge: http://www.caringbridge.org/visit/cj08
and a link to the conference I am hoping to be able to take Christopher to:http://www.barthsyndrome.org/english/View.asp?x=1633
God Bless!
My Purpose
I am an advocate for my kids, and also an advocate for sick children, especially in the area of CHD awareness.
It is also my purpose to spread the word that God is still in the miracle buisness, my son was given less than 6 months to live, was a hospice patient for 15 months and will be 2(!) next month. All glory goes to God.
Description: I am trying to get my son Christopher to the Barth Syndrome conference this July to be
evaluated by specialists. here is a link about the conference:
http://www.barthsyndrome.org/english/View.asp?x=1633
My progress:
This is a long term need assistance request .
My message:
Supporting Documentation: Kristi has the following documentation
Progress:
$ (7%)
Still needed: $2315
Request was active: 456 days
Request created: Mar 21st, 2010 | Request views: N/A | Request modified 2 time(s) | Last modified: May 10th, 2010
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Member Since: 02/28/10 | Login Count: 111 | Profile Views: 1095 | Last Login: 08/31/10 
