The Divine Savior Lutheran Church is hosting its 5th Annual Gift of Hope fundraiser on Saturday, April 27 from 11:00 am to 1:00 pm. There will be BBQ with all the trimmings, a silent auction, and live music. The South Texas Blood and Tissue Center will be on hand from 10:00 am to 3:00 pm. Thirty-five pints of blood are needed.
This year’s fundraiser is for two precious little girls, Bryleigh Shullanberger and Karlee Riser, whose families both have ties to Medina County.
Bryleigh Shullanberger was born a happy, healthy baby girl. As Bryleigh neared her second birthday, she still wasn’t walking. Bryleigh’s parents, Kaprice and Corbin Shullanberger, began working with doctors to determine the cause. After many months of medical tests, scans, and even major surgery, a diagnosis of Metachromatic Luekodystrophy was determined.
MLD is a genetic disorder that affects nerves, muscle behavior, and other organs. It slowly gets worse over time. Rigidity, developmental delays, progressive loss of vision leading to blindness, convulsions, impaired swallowing, paralysis, and dementia. Children become comatose. Untreated, most children with this disease die before the age of five, or often sooner.
Bryleigh has beaten the odds. She is now eight years old. She is no longer able to move any part of her body, eat, or swallow. She is fed through a feeding tube. Bryleigh is literally stuck in a body that doesn’t work.
She has a strong will to live due to the care and attention of her parents. She is a precious little girl. Through prayer she is still with her family. Her parents are praying for a miracle every day of their lives. Currently there is no treatment or cure for this disease.
Karlee Riser is a beautiful, angelic 3 1/2 year old. She’s very active, has a great imagination, is very smart, and loves everyone, especially children. Her parents, Zach and Tori Riser, are an amazing young couple who have been given this precious gift. Karlee was born with Spinal Muscular Atrophy. SMA is a terminal and degenerative disease that causes weakness and the wasting of the voluntary muscles in infants, children, and adults. SMA is the most common genetic disorder linked to infant death worldwide. This disorder affects about 9,000 individuals in the United States. Both of Karlee’s parents carry the gene.
At this time, it is not possible to cure SMA, but research is ongoing to find new treatments. Symptoms of SMA include muscle weakness, decreased muscle tone, limited mobility, breathing problems, problems with eating and swallowing, delayed gross motor skills, spontaneous tongue movements, and scoliosis (curvature of the spine). Karlee wears a brace around her upper torso during the day. She is unable to bear weight.
Karlee is now receiving a new drug recently approved by the US Food and Drug Administration. Spinraza slows the disease’s progression and in many cases improves the strength of many individuals. This drug is injected into the fluid surrounding the spinal cord through a needle inserted in the lower back. Karlee is put to sleep and takes the injection every 4 months. Karlee also takes physical therapy twice a week. Insurance does not pay for this.
Karlee has a little sister, but she is only a carrier of SMA. Tori was already pregnant with Kennedy before they found out about Karlee’s diagnosis.
Gift of Hope has raised over $60,000 in the past 4 years in order to help families with financial costs associated with diagnosed diseases, some of which are terminal. This year we have chosen two special little girls. Bryleigh Schullanberger and Karlee Riser are heroes. They are both special in God’s eyes. Karlee’s goal in life is to become a doctor and help all the little children. Maybe she will.
Heavy’s BBQ plates with all the trimmings will be served from 11:00 am to 1:00 pm at the Divine Savior Lutheran Church Fellowship Hall, located at 405 Ingram Road in Devine. Plates are $9.00.
A silent auction will be held in the Fellowship Hall from 11:00 am to 2:00 pm. Donations are appreciated.
Medina County Sheriff Randy Brown has graciously volunteered his country band to perform from 11:00 am to 1:00 pm.
Life is truly a gift. The Southwest Blood and Tissue Center will be on site for blood donations from 10:00 am to 3:00 pm. We have committed to 35 pints of blood this year. Please remember that one pint of blood saves three lives.
We hope everyone can join us for this special event. Karlee and Bryleigh are a ray of sunshine in God’s eye. A gift of hope is truly a ray of sunshine after a day of gloom.
For more information, contact Robert Capella at 210-771-7484 or Marla Cappella at 210-363-2718.
The Gift of Hope Golf Tournament benefitting Karlee and Bryleigh is scheduled for Saturday, June 22 at the Hondo Golf Course in Hondo. For more information about the tournament, contact Jerry Busby at 830-741-4653.
In memory of Jessie Esch and Joyce Haas.