Hydrocephalus
Hawke is my son whom is 3 years old. He has had 9 brain surgeries this year alone and is not along. Most of you have probably never heard of hydrocephalus; its the #1 reason for pediatric neurosurgery. Sometimes caused by a hemorrhage, developed gestation ally and sometimes from head trauma. There is NO cure and as a nuerosurgeon stated at the meeting last month in Washington "we are using the same technology from 50 years ago". Left untreated will lead to brain damage and death.
The non-profit funding a cure:
Hydrocephaluskids.org is a non-profit, with an all volunteer staff (including myself). Whats unique about this organization (Pediatric hydrocephalus foundation - PHF) is all the money raised in Michigan stays in Michigan to help local children, local research or national research if a project is worthy of funding. There are other "non-profits" that have full time staff on salary.
Please if your going to donate online do it via the Michigan PHF site:
http://www.active.com/donate/phfmi
http://www.active.com/donate/phfmi
OUR STORY IN BRIEF:
Jason Adams – Michigan State Co-Director
My wife and I have been married for 13 years and are grateful to God for the beautiful family He has blessed us with. We have 4 children from 10 months to 8 years of age.
Hawke is our 4th child and is our miracle child! Hawke and his twin brother Jaxon were diagnosed with TTTS (Twin to twin transfusion) at 19 weeks, a rare condition where the identical twins share blood vessels and can be a fatal condition for the babies.
With only 15 doctors in the nation performing the lifesaving surgery we were blessed that a Doctor in Michigan was experienced in treating the condition with laser ablasion. With the babies in the womb he burned the sharing vessels. The surgery was a success (Praise God).
Unfortunately, early labor is a side-effect and my wife was hospitalized on bed rest for six weeks. Thanks to our amazing family and church family I continued to work as they helped take care of our girls at home.
This was one of the most challenging experiences in my life and little did I know more was about to come. Hawke and Jaxon were born May 14th 2008. The boys' hearts had stopped beating and after 12 minutes God breathed life into our little Hawke! We were devastated when Jaxon went to be with the Lord.
After 3 days in NICU, as a result of Grades 3 and 4 brain hemorrhages, Hawke was diagnosed with Hydrocephalus. I'll never forget that meeting with family and doctors. Hawke would overcome many obstacles over the next 3 months in NICU. At times, we were unsure he would ever get to come home with us. He had his first shunt placed 9 months later. This year Hawke has had seven surgeries particularly due to overdrainage.
Hawke is one of the sweetest boys you will ever meet. His infectious smile spreads joy to all. His big sisters are incredible with him and he loves playing with them and roughhousing with his little brother.
I am excited about this cause! Being CO-Director of the Michigan PHF gives me (us) an even greater opportunity to make a large impact on the Pediatric Hydrocephalus community and the community as a whole! Shunt technology has a long way to go and I want to have a part in kick starting the progress!
Awareness is lacking, to say the least, and research requires a leap of progress. Who says WE can't make a difference? We can and we will!
ABOUT HYDROCEPHALUS:
Top Five Facts:
• Hydrocephalus is a lifelong condition, affecting over one million Americans from newborn to seniors
• An average of 40,000 shunt operations are performed each year in this country
• Americans spend in excess of $1 BILLION to treat this condition
• Hydrocephalus is believed to occur in about 1 per 500 births
• Lack of advancements in treatment have left many people with hydrocephalus unable to lead full and productive lives
• Hydrocephalus is a lifelong condition, affecting over one million Americans from newborn to seniors
• An average of 40,000 shunt operations are performed each year in this country
• Americans spend in excess of $1 BILLION to treat this condition
• Hydrocephalus is believed to occur in about 1 per 500 births
• Lack of advancements in treatment have left many people with hydrocephalus unable to lead full and productive lives
Respectfully,
Jason Adams
jasongadams@ymail.com
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