Friday, December 20, 2013
Twenty four years ago, my daughter Becca lay critically ill in the Pediatric Intensive Care unit at Christmas. She was born with Noonan Syndrome. The doctors gave little hope for my tiny titan to survive. Heart failure, immune problems, JMML leukemia, RSV a killer of fragile babies, and a systemic staph infection she was critically ill. I had already almost lost her once when Becca's heart had stopped for l8 minutes when she was 3 months old, I could not lose my daughter at Christmas. My husband had lost his job, we had fallen into poverty when our insurance companies had both denied her coverage, a million dollars in hospital bills with 5 children there was no hope for anything for Christmas. I said a prayer... that prayer was answered and some unknown Santa's created a miracle for my family that Christmas night. I can never forget the miracles of that night and to this day I do not know who helped our struggling family fill my barren cupboards and filled my children's stockings. (The Christmas Story)
I promised that someday when I could, I will pay it forward and help God fulfill dreams and wishes and help others find hope in tough times. I have been honoring my promise for years since. I thought I had already done my secret work this year.
Last night I finally had a chance to check my email and my Google News alert for the day shared a story from Jacksonville, Florida of a mother whose wish is to bring her daughter home. Her daughter Stephanie 26 had Noonan Syndrome. She had saved for a year to head to England for a dream vacation.
Stephanie died the day after arriving on December 8th. Her mother's wish to bring her daughter back home. $3000 they did not have.
Family Struggles to Get Their Daughter's Remains Home to US
I couldn't sleep last night, I shared the links to the story to the facebook walls of the Noonan Syndrome communities. Too many angels, too many losses. Too many little candles lit and the picture tribute I made years ago posted to my facebook walls in memory of those who have lost her lives to NS.
This morning I wrote on the News Channels wall, asking for help to make her wish come true. The local fire department opened a fund. I left a contact information to the Foundation and soon I got a phone call from Rebekah from the Noonan Syndrome Foundation,. The reporter had passed on his number. I shared my information and soon I received a phone call from Catherine McCoy, Stephanie's mother. Listening to her story and hearing about her daughter, I learned that not only has she lost her daughter, but she had lost two sons to Noonan Syndrome. One at the age of one and a half and the other due to prematurity in infancy. Stephanie was her third child who died from complications from Noonan Syndrome. This Mom who has Noonan Syndrome herself and has now lost all three of her children to the devastating effects of NS. I cannot imagine her grief.
I promised her that I would help and somehow we would find a way to help her bring Stephanie home. Talking to her I asked the question if they had life insurance as many with NS cannot get. They have no funds for her funeral.
Making a few phone calls, we have a tax deductible donation site set up through First Giving to collect donations that will be given to the McCoys for getting Stephanie's remains home for her mother and family to say goodbye and try to help with funeral expenses.
I also made another promise, we will see that Catherine will be able to attend the Noonan Syndrome conference in Clearwater in July if she wishes. She has never met another person with NS and maybe it will be something to look forward too. Meeting Dr. Noonan and others with Noonan Syndrome needs to happen.
Christmas is a time of miracles. We are the Noonan Syndrome Community and family. When one of us hurts, faces a loss it affects us all. It dredges up our fears, our losses, our memories.
For me I can never forget that Christmas so long ago.... I cannot stop until her daughter is home. I made a promise to Catherine we will help find a way and help God create another miracle this Christmas.
Last month we nearly lost Becca due to error and complications from a surgery gone awry. Like Becca, Stephanie had restrictive lung issues. The stress to Stephanie's lungs enlarged her heart causing her to have a heart attack. Becca's restrictive lung issues almost cost her her life in early November. Because of our knowledge of Noonan Syndrome and connections with her dad's hospital and partners, we sprung into action and saved her life from aspiration pneumonia with her normal 48% lung capacity and the good lung in danger of collapsing. Becca has lowered immunities for upper respiratory and bacterial infections and she struggles with fighting systemic staph infections.
In my 24 years of being in the Noonan Syndrome world, I have seen too many losses. Too many wee ones and ones of all ages lost to this devastating disorder.
The Tiny Titan, did not give up once again. Becca was never expected to survive and I have lived each day knowing that everyday with Becca is a gift we were never expected to have. This mother is living my worst nightmare times three.
Please join me in making any size donation to help one of our own bring her daughter home.
It is Christmas, a season of miracles. A time for hope and for this family a season of loss. Caring for others, sharing in our joys and sorrows is what we are called to do and the Noonan Syndrome Family we can unite and open our hearts and wallets to a few dollars and together those dollars will add up to give another hurting family a Christmas miracle.
For Catherine McCoy join me in helping fulfill her wish and bring Stephanie home.
With reaching out to the Noonan Syndrome Foundation we have set up a First Giving Fundraiser. Stephanie's family needs our help to bring the body of their daughter home and fund funeral expenses. $3000 to get her body back to the states and a couple of thousand more for funeral expenses.
If you can, please help this family by making a tax-deductible donation to the Noonan Syndrome Foundation. The Foundation is a 501c3 charitable organization. The Foundation will make sure that all funding collected covers the return of Stephanie to her family and her funeral expenses. Any funding left over will be used to raise awareness of Noonan syndrome. For more information, please contact email@example.com. Here is the link to make donations to the family: http://www.firstgiving.com/fundraiser/NSF/steph
On behalf of the Noonan Syndrome Community Worldwide, I offer our deepest condolences to the McCoy family on the loss of their daughter. I am putting up the angel tribute once again in honor of Stephanie and another angel with Noonan Syndrome gone too soon.