We raised $3630 with the booster shirt fundraiser! You all continue to amaze us! We had no idea we would come anywhere close to selling 238 shirts and raising this much money! Thank you so much to everyone that purchased a shirt and made donations in honor of Leo. Please wear your shirt to continue to spread SMA awareness. The funds raised will be combined with funds from Go Leo Go.
As we are now going through the process of establishing Leo’s Pride as a foundation, we decided it was important to have a website with information about SMA, Leo and Leo’s Pride. Please visit leospride.org !
SMA Awareness: Did you know there are different types of SMA?
Type 1: Non sitters, never able to sit. Onset before 6 months, most commonly before 3 months. Children have hypotonia and decreased movement of arms and legs, swallowing and feeding difficulties, and impaired breathing. Prognosis is poor with 80% dying by age 1 with the majority of the rest by age 2 (without intervention). Sometimes the most severe cases of type 1 are termed type 0. These babies are born extremely weak and often only survive a few weeks after birth even with intensive respiratory support. 60% of individuals with SMA are type 1.
Type 2: Sitters, unable to walk or stand independently. Onset between 7-18 months. Legs tend to be weaker than arms. May have swallowing difficulties and difficulty with weight gain, weak intercostal muscles (for breathing). May have difficulty coughing and clearing tracheal secretions. 27% of individuals with SMA are type 2.
Type 3: Stand and walk. Onset >18 months and variable. They achieve independent ambulation. Some may lose this ability and childhood while others may maintain until adolescence or adulthood. Swallowing, cough and hypoventilation are less common but may occur.
Type 4: Walk. Onset is usually in the second or third decade of life with mild motor impairment
Types 3 and 4 combined make up ~12% of SMA cases. In general, walkers have relatively preserved pulmonary function until late into their disease course.
Leo stood up this morning!!
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