What is SMA? It is a disease that steals children. I hate SMA .
I heard this morning that friends of ours beautiful daughter Olivia (3 1/2 years old) earned her wings today . She lost her battle to this terrible disease like many others before her. I just do not get why so many children have to die so young.
Like, my Elizabeth and her older sister Hannah she had Type 1 SMA. Every time, I hear of a child pass because of SMA my heart just hurts(like a sharp pain), shed tears and I feel like a piece of my heart has broken away . To know them on top of it makes the pain in my heart more intense. Her mother Stephanie is a pioneer in the Amino Acid diet for Type 1s and Mary Bodzo the pioneer for Type 2s. They have taught so many parents/caregivers (as well as myself) on the diet. These two women help save so many lives. They gave these kids a better quality of living just by figuring out a proper diet for them. Her Dad Tim is a Respiratory therapist has helped me on many occasion when Elizabeth was in respiratory distress at all hours of the night. They have taught me so much that has helped me help Lizzy and other parents.
Children with Type 1 are diagnosed usually before 6 months of age, more often before 3 months of age. They are not able to hold up their heads, roll over, crawl, sit up without support, or walk. All of their muscles are extremely weak, with the weakest muscles being the legs, upper arms, and neck. Their chest may appear concave, or very skinny at the top, with a big belly. Bell shaped. SMA affects all muscle systems as well including sucking, and swallowing, digesting food. A common cold can easily turn into pneumonia can take the lives of these children.
Statistics show that the average life expectancy of a child with SMA Type I is no longer than 2 years old. Many pass as infants before their 1st birthday.
Each child is affected so differently by SMA that they do not all follow the same progression.
Thank God for doctors like DR.Bach DR. Schroth that practice the NIV protocol(Noninvasive Ventilation) that has helped so many of these beautiful kids survive. With the help of the Internet Parents/ caregivers are now finding resources to help these kids survive longer.
Then..... you can do EVERY THING you can to save your child and one day they have a bad mucus plug, aspiration or illness and you lose them. There are no guarantees with SMA.
I hate SMA......
We need to have so much research done to help DEFEAT this terrible disease. Please help with SMA research. We have lost so many too many....
These are beautiful intelligent kids and they need our help to FIGHT this disease.
I need to go hug my "Lizzy" right now.
Please say prayers for my friends the Price family to help them get through the days a head. To lose is child is so VERY hard. To lose a sibling is also so very hard.
Fly high little Olivia Fly free of SMA.
"We believe in miracles because we live with one"
www.our-sma-angels.com/elizabeth
1 comment:
I share your feelings. I sometimes find myself getting complacent,not putting on the oximeter probe on Jojo before I leave the room...then bam! I hear of another child dying because of SMA. Then I realize that one can never take SMA for granted. That there may come a time when all one's knowledge and experience is not enough...I feel so sad for the Price family. More sad that there are so many beautiful people/families living with SMA that my family has not met. Please send my condolences to your friends.
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