Hope for Holly
By Jana E. Pye, Editor, firstname.lastname@example.org
We do not know how many days we are born with. Newborn babies are not given a list of how many loving smiles they will grow to see, how many kisses they will feel on their cheeks, or how many times the words “I love you” will be whispered into their ears. For the family of little seven-year-old Holly Tolson of Lamar, each day is precious.
Holly was born with Spinal Muscular Atrophy I, and has defied the odds by living far longer than expected with the #1 genetic fatal disease of children under the age of two. I had the distinct honor of visiting this little girl and her parents Marty and Christie at their home in Lamar. Holly has an older brother, Zack age 15, that she adores. Holly’s room is filled with her favorite things – all things pink, sparkly, and very feminine. Her chestnut hair is long and thick, and her nails are painted. Favorite books and toys line the shelves, just as a typical child her age.
The equipment that lines the room is bulky, and must be available at all times to keep her alive.
SMA 1 has left Holly totally unable to move her body, described as limp as a rag doll. Her daily care is a chore list that is long, and insures that she may live to see another day. She must be suctioned out frequently, and her mother does so expertly, telling Holly “thank you” as she completes the life-sparing task. She requires 24/7 care; remarkably, she has only had two surgeries in her lifetime, and has lived longer with her form of SMA both relatively rare with this disease. Sadly, there is no cure.
“I never knew anything about children with special needs until I had Holly,” said Christie.
“When families tell their children not to stare, I want to tell them it’s okay to stare, to ask questions. Children are curious. We have tried to bring Holly into the world, and she has her little friends that love her. This past year, Holly was in a dance class and absolutely loved it. She was in her standing chair and was wheeled on stage with the teacher and did a dance with her daughter, joined by the class at the end. Holly loved it.”
Holly communicates with a device known as an iGaze that allows her to spell out things on the device, tracking her eyes to choose letters, phrases and words. This allows her to have a voice and share her wants and needs with her family.
“We are fortunate to have met some incredible people through Holly,” says Christie. “There are few other children in our area with SMA Type II, and others that we have been in contact with. They have been so helpful, and gave us so much hope that we could do this.”
Although it is incredibly hard to ask for help, the Tolsons are embarking on a fundraising journey to purchase a much needed larger van for Holly to be transported to her physicians and to events that bring joy to her life, such as church functions and other activities in the area.
Her pulmonary specialist is in Wisconsin, which entails a weeklong journey for the family to travel.
To attend to her needs, she needs someone next to her the entire time; a larger van will not only make the lift into the van safer, it will allow room for the growing list of items that must accompany her, including:
Shaker CPT vest
Diapers and wipes
Braces SLO, AFO’s, neck braces, knee immoblizers
Back up batteries
Clothing and bedding
The initial goal was 1000 people to donate $40 to reach the $40,000 goal from June 23 – August 1.
Readers may donate to the You Caring website: www.youcaring.com/holly-tolson-588717 or mail to: Holly Tolson, P.O. Box 1221, Lamar, S.C., 29069.
Keep up to date with her progress at her Facebook page, Hope for Holly www.facebook.com/Hope-for-Holly-715974471798522/?fref=ts.
“We are always overwhelmed by the generosity of this area,” said Christie. “God has blessed us with this little girl, and the many people that have helped us along the way. We do not know what tomorrow brings, but we are grateful for each day.”
To learn more about SMA, visit: CureSMA.org
1 in 40 people are unknowing carriers of SMA
SMA is the #1 genetic killer of children under the age of 2
1 in 6,000 babies are affected