A Personal Story of Daily Life for a Toddler with SMA

Esther and Frank outline a typical day in the life of their 2 year old daughter, Maeve.

Frank: Okay. Well a typical day for Maeve involves a lot of therapies. You know, typically she wakes up after a good night sleep. She sleeps for 11 or 12 hours. She gets some respiratory treatments early in the morning to help her clear out her lungs after a long night of sleep. And then, you know, a physical therapist could arrive at 11:00 am to do a 30-minute session with her where she could be doing range of motion exercises with her, trunk strengthening, head control strengthening, arm strengthening and there's overlap with the occupation therapist as well where -- and they work in tandem. They know what they're doing, each person is doing, each therapist is doing. So that Maeve gets the maximum benefit from the therapies. So some days, she has physical therapy for 30 minutes. She would rest and then she would have 30 minutes occupational therapy, she would rest and then she would have 30 minutes speech therapy. She naps, a nice long nap in the afternoon for two or three hours. Esther: On the vent. Whenever she's sleeping she has the -- Frank: On her BiPAP machine, yeah. And she gets, she watches TV, she was her favorite programs, she will tell you which program she wants to watch. She will tell you what books she wants read. She'll tell you what toys she'd like to play with. She will say please. She'll say thank you. She'll tell you what you want her to do with the toys and she's not afraid to ask for help. [Laughter] But right now, you can see that she's turning the pages of the book herself. [Laughter] She knows all her animal sounds. She knows how to count to ten in English and Spanish and we're also working on some German for her. [Laughter] You know, after that, it's basically wind down. If the weather is nice, we'll go out for a walk. If it's too hot or humid, we'll stay indoors because that's not good for her respiratory function. You know, after 6:00 p.m. when everybody's home, she gets a nice bath. You know, she spends an hour in the bath. She absolutely loves bath time. We use an inflatable neck ring for her so that she has free movement in the bath and that's probably the most movement she has independently by herself during the day. She absolutely loves them. She objects when you take her out. Esther: She loves the water. Frank: She loves the water. And then she has a nice massage, she has more stretching and more respiratory treatments before she goes to bed. And then she goes to sleep every night around 10:00 p.m. after watching one of her favorite shows. And then again it starts all over she sleeps for 11, 12 hours and it starts all over again. And then a very special thing that we do with the weekend for her is that we take her to a pool -- fitness center close by where we actually get her in to a therapy pool. And then she spends well over an hour in that and the benefits from the water therapy are immense for her. And the two of us get -- the two of us get into the water and -- Esther: I mean that's where she can really move freely, you know? I mean it's just amazing. You know, she can actually -- we always bring like a very small ball into the pool with us so she actually can finally reach for something, which she's unable to do outside of the water so… And it's been really, really good I think for her alignment since she's always sitting or, you know, even when she's in the stander, you know, you're never 100% sure that she has the proper alignment. But, you know, with the buoyancy and with the water and you know -- I think it's been great for her positioning.

Spinal muscular atrophy, SMA, RNA, mRNA, splicing, gene, genetic, DNA, antisense, motor neuron, splice, Type 1, Type I, Type 2, Type II, brace, physical therapy, occupational therapy, gastrointestinal, gastronomy, Coffey, respiratory, trunk, range of motion, reading, books, swim, bath, massage, pool

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