A Grandfather’s Love is Helping This Girl Fight Spinal Muscular Atrophy

Spinal muscular atrophy (SMA) is caused by the loss of motor neurons in the spinal cord and the brainstem.

It leads to weakness and muscle wasting that affects a baby’s ability to crawl, sit up, and control head movements. If the baby’s SMA is very severe, it can interfere with respiratory function and the ability to swallow.

For one baby with SMA, her grandfather is working hard to see that she has every advantage in life. He has raised funds for her medical care by hosting a golfing event.

Now, when I think of my grandparents, I am filled with love and gratitude for all they did for me over the course of my childhood and young adulthood. They were always there for me, and they always believed I could do anything I set out to do. They even spent a lot of time (and sometimes money) helping me achieve my dreams. Although both have been gone for many years, I think of them every day.

I believe that one day, little Liani will think of her grandfather, Ron Fritts, with the same love and admiration.

Many babies with SMA don’t live to see their first birthdays because of breathing and swallowing issues. Ron’s granddaughter has already had one scary event where she received an emergency tracheotomy. Since then, her parents have undergone extensive training on how to assist Liani.

There are three types of SMA:

Type I (Werdnig-Hoffman disease) is a severe form that leaves the child with developmental delays, and most can’t sit unassisted, or support their head. It’s usually noticed either at birth or shortly after.

Type II manifests between six and 12 months. These children can sit unassisted, but they can’t stand up or walk without help.

Type III (Kugelberg-Welander disease or juvenile type) usually develops between early childhood and adolescence. While people affected with Type III SMA can walk unassisted, later in life, climbing stairs becomes more and more difficult. Some of these patients will eventually require a wheelchair.

Ron Fritts holds out great hope for his granddaughter–and I applaud him in memory of my own grandparents.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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