PHF Donates $500.00 to Children’s Hospital Colorado Neurosurgery

Christina Brown, (PHF State Chapter Co-Director of Colorado), & her son Jaden, present Neurosurgeon Dr. Todd Hankinson with a check from the PHF for $500.00 to Children’s Hospital Colorado Neurosurgery.
Jaden was the PHF’s 2012 National Face of Hydrocephalus Awareness for the boys.

Jaden in the News

Durangoan seeks hydrocephalus cure

Woman’s son, 2 years old, has brain condition

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By Dale Rodebaugh
Herald Staff Writer

The mother of a 28-month-old Durango boy with hydrocephalus has taken on the leadership of the Colorado chapter of the national Pediatric Hydrocephalus Foundation, a support group with a presence in 25 states.

“I’m promoting awareness of hydrocephalus and raising funds for research,” Christina Brown said Friday. “There is no cure now, which is unacceptable.”

Hydrocephalus is a condition in which cerebrospinal fluid accumulates in the brain. This can cause pressure in the skull, resulting in enlargement of the head, convulsion, tunnel vision, mental disability and possibly death.

The first fundraiser for Brown’s group is set for Sept. 23, when participants will bowl at Rolling Thunder Lanes at the Sky Ute Casino in Ignacio.

Brown began gathering information on hydrocephalus when a pediatrician recommended during a well-baby check at 4 months that her son, Jaden, be tested for a neurological disease. Examinations revealed that he had hydrocephalus and hemiplegia (stroke-induced spasticity) on his right side.

She rattles off facts such as:

One in 500 newborns receives a diagnosis of hydrocephalus.

The disease can be congenital or acquired.

Hydrocephalus is the No. 1 reason for pediatric brain surgery.

Americans spend $1 billion a year on treatment for hydrocephalus.

Research into diabetes is funded at $6 per person, hydrocephalus at 30 cents per person.

Brown was in Washington for two days two weeks ago with other families who have children with hydrocephalus to educate legislators and others about the disease and promote research.

“There were 20 families from 14 states,” Brown said. “We’ll contact them again next year for funding for research.”

Josh Green, a spokesman for U.S. Rep. Scott Tipton, R-Cortez, said the group left a packet of information for the congressman. Tipton wasn’t in the capital at the time.

Brown knows four families and one adult in Durango who have hydrocephalus in the family. She said there are about 30 similar families in the Four Corners.

“Jaden is fine,” Brown said. “He just had surgery as a result of being tongue-tied and is doing well.”

The recently formed hydrocephalus chapter held its first meeting in July. The next meeting is from 5 to 7 p.m. Oct. 12 in Durango Public Library.

daler@durangoherald.com

PHF Press Release

Durango Mom Joins National Pediatric Organization in Battle Against Incurable Brain Condition on Behalf of 2 Year Old Son

 Durango, CO- It has been a whirlwind start to the new year for Durango’s Christina Brown. Just months after her 2 year old son Jaden was selected as one of two children to serve as this year's "National Face of Hydrocephalus Awareness", for the Pediatric Hydrocephalus Foundation, Christina was inspired to get even more involved herself in helping to raise awareness about Jaden’s condition.

Finding out that there was an opening in Colorado for a State Chapter Director for the Pediatric Hydrocephalus Foundation, it didn’t take Christina long to inquire about how to fill that role and then accept the offer to actually fill that position.

“I want to raise awareness and educate people about this life-changing path that is soprevalent. I also hope to share all I have learned and learn so much more from being able to be part of the PHF and PHF Colorado. Parents need support in this journey that will forever change our children’s lives”, Christina said.

Occurring in approximately 1 of every 500 births and in over One Million Americans today, Hydrocephalus is a condition in which excessive fluid gathers in the brain, abnormally widening spaces in the brain and placing potentially harmful pressure on brain tissues. Because of lack of advancements in treatment, many affected individuals areleft unable to lead full and productive lives.

Untreated, Hydrocephalus could be fatal. 

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About PHF

The Pediatric Hydrocephalus Foundation, an all-volunteer non-profit 501(c) (3) charitable organization,educates the community by raising the level of awareness about hydrocephalus and provides support to families, friends, and children affected by this brain condition. 

The PHF also raises money for and works with the medical community in searching for a cure and additional treatment options for those with hydrocephalus. Additionally, the PHF advocates on behalf of the members of the hydrocephalus community and works with policy makers at the state and federal levels to raise awareness and push for moreresearch and support in the fight against hydrocephalus. All donations are tax-deductible. 

Since December 2010, the PHF has awarded $70,000.00 in grants and donations to Hospitals, Neuroscience Institutes and Medical Research Centers for Hydrocephalus research & education.

For more information, visit www.hydrocephaluskids.org. 

For Real

Ticking Time Bomb

With Jaden doing amazing over the last 2 years, meeting milestones and making strides. For someone who I was told would never speak, he can say 12 words and jabbers much more! Once he has surgery on his tongue and lips he will have a much easier time speaking, forming words (I hope), none the less on his second birthday Jaden said the word Happy. This is the perfect word for him because that’s just what he is-happy. About a week later he started sitting up from a laying position for the first time by himself, which we had been working on in therapy for about a year. He is doing amazing.



Jaden



It is hard to not be too complacent day to day with Hydrocephalus and Stroke. Days pass and each day of health is something to be thankful for. Even all the wonderful days are not enough to keep my mind from wondering when will our luck with this shunt run out? Being dependant on a valve and tube for your health is terrifying as a parent. It is very overwhelming emotionally when Jaden gets sick, I try to keep my mind in check by thinking oh it’s a cold, just a bug. But it hard to keep my heart from breaking thinking about a shunt malfunction or infection; the thought of more brain damage, more pain than he has already gone through in his small number of years.

I know this feeling will never go away and Jaden will always face Hydro, Stroke and the life full of complications forever.

Life must go on, how can I look into my sweet babies eyes and feel fear for all the unknown when he is looking at me to make things better, comfort and healing. There is no treatment other than the shunt which is unreliable to say the least. There are no words for the middle of the night, exhaustion that brings tears and prayers to my mind. Sometimes it’s just harder than others to be strong for my kids. Somewhere in there I find a place for the fear and hope for balance.

Love and Health,

Micah and Jaden's Mommy

Colorado HealthStroy, Guest Blog

Here is a guest blog I wrote about being a caregiver. Hope you enjoy it!

Christina Brown, Colorado HealthStory Storyteller, talks about being a caregiver

By Storyteller | Published: March 26, 2012

 

                 

   Giving a Gift

My intention when I started writing this was to blog about medical challenges, as we all know there are numerous ones to choose from. Then I got thinking about all the pieces that must come together for patients to heal. I asked myself, what makes people better? Proper access to medical treatment, good follow-up care, provider follow through, strong communication, and extensive education…the list goes on and on. Yet no one can underestimate the importance of a consistent caregiver. Being a full-time caregiver is a huge commitment, and for many of us, it means our lives are changed forever.
No matter the need of your loved one, being a caregiver is stressful. Having a child with special medical needs takes caregiving to another level.  Days are filled with such intense emotions, large enough to move mountains, the highest of highs and the lowest of lows. Jaden has given me so much joy, and he makes my heart swell. Yet there are times I am filled with an overwhelming loneliness that only the isolating task of being a caregiver can produce. Despite the daily roller coaster of emotion I am on, the greatest gift I have ever received is to see my baby smile and hear his laugh while playing with his brother.
Being a caregiver is like being an ever present cheerleader. I spend my days working hard to give Jaden the love and attention he needs, shuttling him back and forth to various therapy sessions. We caregivers are responsible for helping the ones we love make improvements to their individual qualities of life. These improvements may take years of tireless work, often wrought with doubt that things will ever get better. But I have learned that healing is a process. And nothing means more than seeing Jaden’s pain and helplessness turn into his successes.  Through all of this I have realized that no matter how hard the situation may be at the time, it will get better with hope. Over the years I have been so close to losing hope and accepting defeat in this never ending battle. Yet the reward is much larger than I would ever know. It is my wish that everyone has an experience with a caregiver. Whether you act as one yourself, or are special enough to have one in your life; it is important to understand their sacrifice. I can say, through all of these emotional hurdles, that it has been my honor to care for Jaden.
If you are interested in learning more about my family and our journey, listen to our story here or visit my blog.
Christina Brown

http://coloradohealthstory.org/1508/christina-brown-colorado-healthstory-storyteller-talks-about-being-a-caregiver/

Pediatric Stroke Video

Pediatric Stroke Awareness Video

Jaden is in here at 6:14, as well as a bunch of other amazing kids. Just wanted to share!

Dear Jaden

Turning Two

Looking back at the last 2 years, I have been on a rollercoaster of emotions. When I first saw your sweet, new pink little face, I would have never guessed in a million years we would be here in just 2 short years.  I will never forget feeling in the pit of my stomach, knowing something was wrong. Looking back just days before all the appointments started, we were at the fair and a lady wanted to see our new you.  When she did, she blurted out “oh he’s cute, what’s wrong with his head.” My jaw hit the ground I am sure, we at the time made a joke of it, oh we all have big heads…. Never knowing that “joke” would turn out to be our forever reality.  It’s hard not to think about your shunt, is it working? Does it hurt you? Will it work tomorrow? It brings me to tears to think of the answers of hard questions you will ask me as to why? Sometimes, when you are having a bad day I am wishing I could take it away. Truth is I know I am not strong enough to be you, survive what you do and be as happy as you!

In a way I think life brings us to where we need to be and with the people who we need or may need us even more. Because of you I have learned so much about myself, you, your brother, dad, our family, hospitals, doctors, your body, your brain and sometimes total strangers it amazes me it has only been 2 years and at the same time it feel as if the future is charging front and center, faster than ever.

You inspire people everywhere we go, and people who meet you learn something new.  I want you to know that I am ever proud of you being 2! I believe in you more than you believe in yourself sometimes and even when it is unbearable, just keep trying. You can do it. Mommy, Daddy and Big Brother love you.

Happy Birthday Big Boy!



Jaden, 2 and Daddy