Story
Roxborough brother loves his disabled sister

From left, Cole Lynch, 6, and his sister, Hayley, 8, share a moment. Haley was diagnosed with tuberous sclerosis complex.
From left, Cole Lynch, 6, and his
sister, Hayley, 8, share a
moment. Haley was diagnosed
with tuberous sclerosis complex.
Provided by: Cindy Lynch
Contributed by: Cindy Lynch on 8/29/2006

Cole Lynch is a pretty extraordinary 6-year-old with a pretty extraordinary sister. Born into a world where both of his parents were taking a crash course in Tuberous Sclerosis 101, Cole has never known a life without the disease.

He's calm, cool, and collected when his 8-year-old sister has one of her many daily seizures. He grabs her hand and walks her through a busy parking lot knowing that if he lets go, she will run off, completely unaware of the danger of traffic. He knows her "Haley signs" (her loose version of American Sign Language) and tolerates her constant grunting and self stimulatory behaviors. Most of all, he just loves his sister.

Haley was born with a grape sized tumor in the left ventricle of her heart. It was one of the telltale signs of an autosomal dominant disease called tuberous sclerosis complex (TSC). Doctors began asking the parents, Jim and Cindy, if there was a history of epilepsy, autism or mental retardation in either of their families. Because there wasn't, and because Haley showed no other signs of the disease at birth, she was sent home from the hospital with the advice to "watch out for seizures."

Jim and Cindy didn't have to wait very long. Haley began having infantile spasms (a serious chaotic degenerative seizure type seen in infants birth to 3) when she was just 3 months old. It was at this time that she was officially diagnosed with TSC. Haley's first year was an emotional roller coaster, with short periods of seizure control followed by horrible new seizure types causing regression for Haley and terror for her parents.

Tuberous sclerosis complex is a genetic disorder that causes tumors to form in many different organs, primarily in the brain, eyes, heart, kidney, skin and lungs. Seizures, mental retardation, autism, ADD and behavioral disorders are all prevalent symptoms.

At this time, only 1/3 of TSC cases are known to be inherited. The other 2/3 of cases are believed to be the result of a mysterious unidentified spontaneous mutation. Haley's case falls into the mutation category. The incidence of TSC is estimated to be 1 in 6,000 births which means approximately 50,000 Americans and 1 million individuals worldwide are affected. Yet it is virtually unheard of. It occurs in both sexes and is seen in all races and ethnic groups. There is no cure.

Because there was no family history of TSC, Jim and Cindy were told there was a less than one percent chance of them having another child with tuberous sclerosis. Since they had always dreamed of having two kids, they decided to have another child.

Cole was born Sept. 10, 1999, and was the picture of health. The sense of normalcy that he brought back into the Lynch's life could not be accurately put into words. By the age of one, he was passing his sister in just about every level of development.

He sat in his car seat through all of her doctor's visits and therapy appointments just soaking in everything he heard. His parents credit Haley's speech therapy visits for giving him a tremendous use of the English language to this day!

By the age of 18 months, Cole could say "tuberous sclerosis" better than most adults. He would yell "SEIZURE!!" if one of his parents wasn't in the room when Haley would begin having an aura. He learned how to use the magnet on her vagus nerve stimulator and would run in and swipe it across the pacemaker like device implanted in her chest trying to beat the seizure to the punch by sending an impulse directly to her brain. He would follow therapist's instructions on how to best talk and play with Haley in order to get into her world and reach her.

The Tuberous Sclerosis Alliance of the Rocky Mountain Region held their first ever Step Forward to Cure TS walk/run in Highlands Ranch in 2003. The walk benefits the Tuberous Sclerosis Alliance, which is the only national voluntary health organization for TSC.

Cole and his family were part of the planning committee and Cole helped to pull his sister in a wagon that first year when he was just 3 years old. In each year since, he has done more and more to help with the walk-a-thon, from getting up at 5 a.m. to help with setting up the event to going door to door to help raise money.

Cole says, "I love doing Haley's walk! It's a fun day and I get to see lots of special people in my life and help Haley."

This year, Cole has his own Web page for fundraising for the walk and hopes to raise $1,000 on his own. The event will be Sept. 9 at Roxborough Community Park in Littleton.

Without a doubt, Cole is an extraordinary kid. He lives in a world where seizures are just part of life and where autism is just something you work around. He does it in a way that most would find commendable; he never complains about having to do things like help his big sister get buckled into the car or having to do chores his sister escapes and he rarely sees that his life is very different from those of his peers.

He loves that his sister is "special" and worries that she may not be after a promising brain surgery that Haley will be having in November at NYU in New York. This series of three surgeries may actually end her eight years of daily seizures.

Cole has gained many friends in the special needs world by being so caring and patient and his parents are certain that his experience growing up with Haley will help him develop into an incredible man. One who, no doubt, will care and love his extraordinary sister.

To donate to Cole's fundraising effort, go to www.firstgiving.com/colelynch. To get updates on Haley's upcoming brain surgery and read more about the Lynch family's journey with TSC, go to www.tlcontact.com and enter the page name "haleylynch". To learn more about TSC and the TS Alliance, go to www.tsalliance.org. To learn more about the 4th Annual Step Forward to Cure TS event, go to www.stepforward4tsc.com.


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Showing 1-4 of 4 Comments
Submitted By: Melissa Gault
posted on 9/8/2006 @ 9:22:38 PM
Rated Story
Haley is blessed to have a family who is so involved and full of love. Your family inspires us daily and we will always have a special place in our hearts for each and every one of you. Even though you all have so much to deal with in your own lives, you continue to reach out and help others on a daily basis. Thanks for the constant inspiration you provide! May God bless you all.
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Submitted By: Betty Lehman
posted on 9/5/2006 @ 4:48:49 PM
(Not Rated)
What a wonderful story about a wonderful family! Betty Lehman
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Submitted By: Beth T
posted on 8/29/2006 @ 4:57:44 PM
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Cindy, Excellent story! Cole is an awesome big brother. It is wonderful to see a brother who cares so much for sister and watches out for her. Prayers for a successful surgery and recovery for Haley.
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Submitted By: John Brandstetter
posted on 8/29/2006 @ 4:06:47 PM
Rated Story
Great story, Cindy. Cole sounds like a very compassionate kid. Haley is lucky to have him. I wish Haley the best of luck on her surgeries.
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Showing 1-4 of 4 Comments



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