Monday, December 17, 2007

Message from Madison!

Hi All, I wanted to share a special message that we recieved today from another Miracle child, Madison is a 10 year old with SMA Type 1. Below is the message she wrote to Mary:
Date: Sun, 16 Dec 2007 19:27:49 -0800
Subject: i am a miracle

hi! my name is Madison. I saw pictures of Mary on her web site. She is so cute! My web site is I have SMA type 1 too. I am 10 years old. Keep believing in miracles! They can happen! Love and prayers, Madison

This was my reply:
Dear Madison (and parents),

Thank you SO much for writing! We know you are a special miracle, just like our little Mary is a miracle! You have a very inspirational story that I enjoyed reading about on your website. (I just read the article by Candace Preston-Coy in the Dublin Newspaper) You and your parents have such a great attitude and we feel exactly how you feel. The doctors also told us to "just enjoy the time we have with Mary", but we don't accept that answer! We know Mary is a fighter and we believe in miracles!
Thank you so much for writing and for praying for our little Mary. We pray for you as well, and all children with SMA. Thanks also to your parents for fighting for you, and for a cure, and for fundraising, and lastly for sharing your amazing story! We hope you have a great day and stay healthy! I'm sure you will be one of Mary's special friends and we look forward to meeting you someday, perhaps at the SMA conference!

Ryan and Kate (Mother of Mary, 10 months, SMA type 1)

The following is an excerpt from the article I mentioned above:
. . . Madison has SMA Type 1 (spinal muscular atrophy), the leading genetic killer of children under the age of 2.

The disease destroys nerve cells known as motor neutrons, which control voluntary movements such as crawling, walking, head and neck control and swallowing. Most deaths come from lung problems, Madison's mother said.

When Madison was 1 year old, doctors dismissed the idea of providing special equipment to improve Madison's quality of life, and told the Reeds to take their daughter home and enjoy what time they would have left with her.

Annette and Carl dogged the physicians, convincing them Madison was not "the textbook SMA child," and had the right to anything that would prolong her life.

Through their advocacy and the constant care she receives from her mother, nurses and other trained volunteers, Madison celebrated her 10th birthday on Feb. 4.

Madison needs 24-hour care only medical professionals, trained in the treatment of SMA patients, can give. Several times a day, a tube removes accumulated mucus, which would choke her if not removed. Her disease also leaves her susceptible to what would otherwise be minor ailments, said her mother, and she hasn't attended school since last October, when colds and flu spread among her classmates. A tutor works with her at home four or five days a week.

Madison knows she's sick.

"She hears and knows," said her mother.

Madison was hospitalized in January 2006 for 10 days with a severe respiratory virus.

"We almost lost her," Annette Reed said. "This was the worst illness she has been through, and it really took a toll on her emotionally. ... She didn't sleep for days because she knew she stopped breathing."

If her own health problems failed to remind Madison how precarious life is, the deaths of several friends, some who were not as sick as she is, bring that reality to her.

It's not all doom and gloom in the Reed household, however. In fact, the opposite is true.

Madison sleeps until noon, a routine that began during last year's illness, then it's time for a bath, teeth brushing, hair detangling and breathing treatments. Then mother and daughter do a little role playing, with Madison playing Michelle from the old TV series "Full House" and her mother playing one of Madison's friends.

Madison then takes a spin around the house in her electric wheelchair, then settles down to watch a video, work on her computer or talk to Hannah, a friend in Florida who also has SMA, via computer on a daily basis. The girls' both have programs so they can see each other as they talk, Annette said. . . .

--Truly and amazing story, and worth taking a look at her website as well. Very informative!

Lastly, thanks to everyone who has visited Mary's new site, and who have called, and e-mailed, and prayed for Mary! She did well again today. Coming off the BiPAP (ventillator) during the day to eat and play. She smiles while playing with mom and dad and even our friend Cherie who visited and read her some books! She is truly amazing and we have faith that she will get through this and all of the struggles that lie ahead of us. Thanks again to everyone!


1 comment:

Carrie Stokes said...

Ryan and Kate,

Thanks for the updates on Mary. I hope she continues to get better. There are many people in Texas praying for y'all. I enjoyed reading about Madison. She does sound like a miracle.

Carrie Stokes