Raising a Child With Marfan Syndrome With Guest Allison Pullins

The Spoonie Struggle

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Episode 29: Raising a Child With Marfan Syndrome With Guest Allison Pullins

In this episode, Allison Pullins discusses her experience raising a child with Marfan Syndrome. James was diagnosed with this connective tissue disorder when he was 2 years old. He experiences an aortic aneurysm, is very nearsighted, has dislocated lenses in his eyes, and low muscle tone. The first signs of something different was asymmetry in James’ eyes. Things were fine at the first eye doctor appointment, but 6 months later, his vision prescription was drastically different. He needed glasses by age 1. Around age 2, he was found to have lens dislocation in his eyes. He then underwent an echocardiogram, which found an aortic aneurysm. It was recommended that he undergo genetic testing, which quickly found Marfan syndrome.

When Allison got the diagnosis, she went through a year-long grief process, where she had difficulty coping. She still functioned, but emotionally, she was having difficulty. To cope now, she engages in a lot of self-care. She exercises, meditates, eats healthfully, and makes sure to stay in the present. She also moved closer to Buddhism, found a community, found her higher purpose,and strengthened her relationships. She has found that being in the moment has made her a better person and parent. She discusses her fears and concerns for her son and discusses her son’s understanding of the condition. She discusses the lack of advancement of treatment for the condition. His condition is relatively stable currently. Treatments are limited for Marfan Syndrome but James has used losartan and a beta blocker.

The family is choosing to move to be closer to family in order to advocate for James and to use their social support. She found a lot of social support and relies heavily on the Marfan Foundation. Going to conferences really helped her meet people. When raising a child with special needs, consider your child’s needs, get to know your child, listen to your child, and make the best decisions you can. Allison discussed the sibling challenges of special needs.

Strengths Finder Test

Marfan Foundation Children’s Program

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