Blair Reagan says she’s seen the true definition of community this past week.
Just one week ago, Blair and her husband, Trenton received the news from doctors at St. Louis Children’s Hospital.
Their daughter, Caselynn, was diagnosed with Spinal Muscular Atrophy (SMA) Type 1.
According to the website www.fsma.org, “Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing. Sometimes feeding, swallowing, and respiratory function (e.g., breathing, coughing, and clearing secretions) can be affected. The brain’s cognitive functions and the ability to feel objects and pain are not affected.”
Those diagnosed with SMA are grouped into one of four types (I, II, III, IV), depending on their motor function. Type I is the most serious of the four types.
For a child to be affected by SMA, www.fsma.org says that “both parents must be carriers of the abnormal gene and must pass this gene on to their child,” giving the child a one in four chance of inheriting the disorder.
Caselynn was admitted to Children’s Hospital when she was almost two months old. She had been congested and her parents were concerned with how “floppy” she appeared to be.
“The doctors would tell us, ‘oh, you’re just comparing her to your other children.’ But, we could just tell something was different,” said Reagan.
After a series of nerve conducting tests on Caselynn in early July, the parents were told it was a “99.9 percent chance” for SMA Type I.
Last Wednesday (July 17)came the confirmation of the diagnosis.
Reagan explained children diagnosed with SMA Type I have a life expectancy from six months to two years old.
“The nerves in their muscles are dying because the proteins aren’t there,” Reagan said of those receiving the diagnosis. “It’s a slow progressing disorder.”
She said Caselynn is not able to move her legs, but still has movement in her arms, hands, and toes. Children with SMA Type I can develop pneumonia. Often times, this becomes fatal for the child.
Reagan explained she and her husband have already decided when that time comes, they will have doctors make Caselynn comfortable, but not take drastic measures to keep her alive.
They are enjoying their time with Caselynn. In addition to Caselynn are sisters Cheyenne, age 7 and Eleanor, age 22 months; and brother, Hayden, age 5. And, to help the Reagan family make the most of every moment together with Caselynn, the community is reaching out in whatever way they can.
Sandy Reed is a friend of the family and has started a Facebook page, Benefit Page for Caselynn Reagan.
In just one short week, there’s been a bake sale organized and held to raise money for the family.
“We raised $352 from just the bake sale,” said Reed.
Plans are being made for a yard sale, 5K run, treasure hunt, and road rally. There’s an online auction through the Facebook page. An account for the family has also been set up at the Bank of Missouri, checks payable to Benefit Account for Caselynn Reagan. The address is: RR 5 Box 1237; Patton, Mo. 63662.
“We want to say ‘thank you’ from the bottom of our heart,” expressed Reagan. “We are so grateful and amazed at how the community has backed us up through this.”