Tuesday, December 30, 2008

Sweet Sara's Chargers

“Training is the opposite of hope”. –Nike slogan 2008

My long term goal is to establish a non- profit organization that will provide financial assistance for uncovered medical expenses of chronically ill children. The costs of caring for a chronically ill child are staggering. In our case, Sara has private insurance coverage, as well as supplemental Medicaid called The Katie Beckett Waiver. The Katie Beckett Waiver is not based on income, but rather medical need and was designed to pay for co pays, premiums, prescriptions and most uncovered medical costs that would otherwise cause hardship for a normal, working family.

This year some changes were made to this program, probably due to funding cuts and system abuse which have made it very difficult to qualify, and just as hard to get actual expenses covered. It is now a system of denials and appeals, and only the most persistent get results. We still have costs of over $1400 per month that is uncovered by either plan. I still ask openly and with amazement, “how can this be?” I exchange ideas and resources with other parents, and find my dear friend Jenny and her sweet baby boy Bryce with a diagnosis of cystic fibrosis does not qualify for assistance, and I openly ask “how can this be?”

I want to do my own fundraising and empower other families to do the same. Ultimately money will go towards either medical expenses, or any unsubsidized item prescribed to address special needs by speech, occupational, or physical therapists, or special needs educator. Families may fundraise on their own behalf, friends and family may fundraise on behalf of specific friends in need, and anyone can apply for assistance from the general fund, and hopefully they will be able to do so with as little red tape and “case working” as humanly possible. I am working diligently to develop a program that will address these needs with as little red tape as possible, but with guidelines that assure money is not misused. My good friend Katie Elwart has volunteered her legal services toward the goal of establishing our non- profit charter.
To raise money, we will register in local races, and solicit sponsorships for our participation. Prior to each race, runners will be given a fundraising goal, and a pledge form to collect donations. We will meet on race day wearing our Sweet Sara’s Chargers t-shirts to raise awareness about our project. I am hoping that once we have established ourselves this year running, we can then host our own races and invite runners all over Atlanta to join our cause.

My short term goal is to create a team of runners of all abilities, to fundraise in honor of my darling daughter and also towards my long term goal of starting a non- profit foundation. I am hoping that my efforts to stay active will motivate and encourage others to maximize their own fitness potential.

My specific goals for 2009 are as follows:

*Find at least 25 people to set personal goals, and commit to a training schedule to run or walk on Sara’s team “Sweet Sara’s Chargers” in various running events throughout the year. Each member will use running and walking to fundraise on behalf of the foundation.

*Raise funds to help supplement or cover Sara’s uncovered medical expenses, and those of two other families in need. I nominate my friends The Jones’ and their sweet baby boy Bryce as one of those families.
*Raise 1000$ for the CHARGE syndrome foundation. CHARGE syndrome gets virtually no exposure in the media and is pretty much unheard of; they need all the help they can get.

*Raise 1000$ for the American Partnership for Eosiniphilic Disorders (Apfed).

*provide 6 meals for families staying at The Ronald McDonald House here in Atlanta. This means catering a meal for 12-16 people on 6 separate evenings. The Ronald McDonald House is a pretty high profile charity that receives almost so much support that providing a meal means being on a waiting list to volunteer there. Therefore, I will not being fundraising on their behalf, just asking for volunteers that can donate time and food to each meal, and possibly help us serve it. We have stayed at The Ronald McDonald House in Cincinnati many, many times, and simply want to repay the kindness and encouragement extended to us there. It is an amazing place.

*Complete my first full marathon in 2009 and write about my experience in my other blog; The GRITS runnning journal.

To join Sara’s team as a runner, a volunteer, or even as a donor, please contact us at sweetsaraschargers@yahoo.com, and we will add you to our mailing list. Everyone has different abilities, experience and levels of fitness. I encourage everyone to set a goal just slightly out of your current ability and work towards it slowly and carefully… you will amaze yourself with what you can do. You may walk, or run any distance you choose. A 5k race is 3.1 miles, which is roughly the equivalent of 30 minutes of cardio. A 10k race is 6.2 miles, a half marathon is 13.1 miles, and a full marathon is 26.2 miles. Some of those distances may seem a little daunting at first, but with practice and the encouragement of others with common goals, you will get there.

I encourage everyone to ask your employer to sponsor your participation, and anyone you are willing to ask to pledge donations for your efforts. Some employers may even agree to match donations you collect, it’s always worth asking. Donors will be able to contribute online, and also by cash or check. We will provide pledge forms and the materials you need to solicit donations. We will have the t-shirts ready for sale shortly and they will also be part of our fundraising efforts. Our first race is February 28, 2009, so while we get those wheels in motion, start spreading the word.

Here is the first string of races I have chosen for our team, if anyone would like to add more please just let me know. I found them all through www.active.com:

Guns N Hoses 5k, February 28, 2009, Woodstock, GA You may choose to run for the “guns” or the “hoses”

10th annual Colt’s Cup 5k, May 2, 2009, Alpharetta, GA

Gate River Run 2009 5k and 15k, March 14, 2009, Jacksonville, FL

ING Georgia Marathon and Half Marathon March 29, 2009, Atlanta, GA

Peachtree Road Race 10k, July 4, 2009, Atlanta, GA

To register, go directly to www.active.com.

Direct any questions to sweetsaraschargers@yahoo.com We can recommend an online training resource for your specific goal, or you may find one of your own. I really like Jeff Galloway because his training schedules are conservative and geared towards beginners. I don’t want anyone getting injured! I am no expert, just an enthusiastic runner and will do my best to connect you to the best information out there. We have several experienced runners on the team, but when in doubt, please ask your doctor!

Here are some great online training resources:

Runners World
Marathon Rookie
Jeff Galloway
The Complete Running Blog Network

Here are some inspirational books worth reading:

“The Art of Happiness”- The Dalai Lama

“Eat, Pray, Love”- Elizabeth Gilbert

“Galloway’s Book of Running”- Jeff Galloway

“The Courage to Start”- John Bingham

“Ultra marathon man”- Dean Karnazes

“50/50”- Dean Karnazes
"Comfortable with Uncertainty" by Pema Chodron

"There is really nothing you must be and there is nothing you must do. There is really nothing you must have and there is nothing you must know. There is really nothing you must become. However, it helps to understand that fire burns, and when it rains, the earth gets wet." ---Buddhist saying

"Forgiveness is a gift. Bestow it on yourself."

Monday, December 29, 2008

All about my sweet Sara

A slideshow of Sara's first year:

Sara was diagnosed with CHARGE syndrome at about 3 months of age, and eosiniphilic esophagitis around 15 months old. These are both very rare conditions, and even more rare for them to present together as in Sara's case. She was born with a unilateral cleft lip and palate, and here in Atlanta the Scottish Rite protocol is to visit the craniofacial clinic, which includes consultation with a geneticist. Our geneticist suspected CHARGE as well as several other genetic syndromes, and for a short time even cystic fibrosis. She had blood drawn to screen for the syndromes suspected, all of which returned negative. Her blood and sweat tests for CF tested negative as well.
At the time of Sara's birth there was no test for CHARGE syndrome, although I do believe they have identified certain chromosomes by now. CHARGE is an acronym for the midline birth defects that may occur together. Sara was sent to many different specialists and had several systems of her body examined and tested before our geneticist would mention CHARGE as a possible diagnosis. A child might have only some of the 6 major diagnostic criteria, and then there are other related minor diagnostic criteria that may be related as well.... no child with CHARGE is like any other.
Please take a moment to read about CHARGE syndrome straight from the CHARGE Syndrome Foundation website. http://www.chargesyndrome.org/about-charge.asp their information is far better than I could write, and easy to understand. Sara's CHARGE diagnosis consists of the following conditions:
C- Coloboma Sara has colobomas in both of her eyes, in one eye it effects the retina and optic nerve and the other just her retina. This was found during an ophthalmology exam at 2 months old. We do not know yet how this affects her vision. Part of her care plan this year is mapping together her viable field of vision in preparation for entering the public school system.
H- Heart defects Sara had a PDA at birth that closed safely without surgical intervention, and a heart murmur which she outgrew by 2 yrs. She received antibiotics for the first two years before all of her surgical procedures, and was eventually discharged by cardiology with a healthy heart.
A- choanal atresia Sara had choanal atresia in her right nasal passage. We traveled to Cincinnati every three months for nearly three years for a series of surgeries/ dilations, and several sets of nasal stents to keep the tissue in her sinuses open. Her scar tissue liked to grow like crazy after months of wearing stents. She suffered from obstructive sleep apnea and stridor for the first three years, and usually slept with a pulse ox monitor, and blow-by oxygen to keep her oxygen saturation at a normal level. Her tonsils and adenoids were removed to make even more room..and we hope to avoid nasal dilations in the future. We thank God and the doctors at Cincinnati Children's Hospital Medical Center everyday for sparing her a tracheotomy.
E- ear malformation Sara has the characteristic CHARGE ear, low set and missing part of the helix. She also has mild conductive hearing loss. She has PE tubes in both ears, placed at 2 months old.

cleft lip and palate- Sara had a severe unilateral cleft lip and palate at birth that has begun to be repaired surgically. At two months she had a Latham oral device placed to minimize the width of her cleft. At four months she had her first plastic surgery to construct her lip and nose. She had very serious complications after this surgery and was on life support for over a week. We learned later that this was because her choanal atresia had gone undiagnosed. She had her first palate repair at 12 months and had an unusually long, complicated recovery in the PICU at Scottish Rite, once again because her choanal atresia had gone undiagnosed. She still has fistulas in her palate and needs more surgery to complete her reconstruction.

torticollis- Sara's neck favors one side. She was referred to PT at 2 months. This is probably due to blind patches in her vision combined with weak muscle tone in her neck.

hypotonia- Sara has low muscle tone throughout her entire body, including her tongue and swallowing muscles. She is g-tube fed because she aspirates liquids when she swallows.

GERD- Sara has had GERD since birth and has been medicated with prilosec to manage it. This diagnosis lead to another diagnosis, unrelated to CHARGE syndrome called eosiniphilic esophagitis, which is a major challenge in Sara's health and overall well being. We have not met any other CHARGE kids yet with this diagnosis.

Reactive Airway Disease- this is essentially asthma in young children. Sara receives breathing treatments of pulmicort daily, and albuterol frequently as needed. When her upper airway becomes tight or congested, it usually triggers aggravation and fatigue in her lungs.

developmental delay- Sara is nearly five years old and seems about two years behind developmentally (gross motor skills more so than fine motor skills, speech severely delayed). We attribute this to her hearing and vision impairment and frequent hospitalization.

OCD/ autistic type behaviors- These are a little more difficult for me to share and explain. Sara bangs her head and hurts herself when she does not get her way, and often times it is a random whim that seems to come from nowhere, and quite predictably about food she cannot have due to her allergy; eosiniphilic esophagitis. She obsesses over certain movies and children’s shows, wanting to view them repeatedly, literally several hundred times.
Eosiniphilic Esophagitis
Totally unrelated to CHARGE syndrome is eosiniphilic esophagitis. My layman’s explanation is that, in Sara's case, she is allergic to almost all foods. Sara was referred to Cincinnati Children's Hospital Medical Center in Ohio for a rare airway obstruction called post- crycoid hemangioma. It was a cluster of blood vessels that had built on her vocal chords, and whenever she cried or created pressure struggling to breathe through her constricted nasal passages, this mass of tissue would inflate with blood and completely obstruct her windpipe. It was removed in a series of several laser surgeries. Because of her complicated sinus, digestive and lung history, she was automatically tested for all sorts of things while under sedation in Cincinnati. This is where eosiniphils were first discovered in her esophagus, where they do not belong, which then lead to the diagnosis of eosiniphilic esophagitis. Regular food causes reactions in her esophagus that create long term, irreversible damage. Her diet is almost exclusively a powered amino acid based medical food called elecare, delivered via feeding tube. To learn more about eosiniphilic esophagitis here is a great site: http://www.apfed.org/ Click on the informational video "Life without Food".
Now that I have typed all of that, I realize that if you have not ever had the pleasure of meeting Sara, you might think that she leads a pretty depressing, awful life, but that is just not the case. She is full of love, and light, and spunk, and laughter and energy. She is so funny, and such a precious, life changing treasure to just about everyone she meets. She is overall, a happy child. She loves to dance, and to torture her big brothers. She is learning sign language, playing with Bratz, chasing the dog, bullying boys in her class and making me proud every single day!

A slideshow of Sara's second year: