SMA (Spinal Muscular Atropy) Type 2 condition

Ms.Cor

My niece who is 2 1/2 years old was recently (within the last 6 months) diagnosed with a condition called Spinal Muscular Atropy (SMA) Type 2.

The intermediate form affects children who are never able to stand and walk but who are able to maintain a sitting position at least some time in their life. Body muscles are weakened, and the respiratory system is a major concern. Life expectancy is somewhat reduced but most SMA II patients live well into adulthood.

I was basically trying to find out does anyone know of any other kids/adults suffering from this condition or similar conditions? There does not seem to be a support group and information is very hard to seek
I would appreciate if anyone could help with any information they may have

evica

Hi there,

I have a daughter who has a same type of condition. How is your niece' son? Did you find any support group for him?

Ms.Cor

Hi evica,

Thank you so much for your reply.

My niece Grace is turning 4 this year. She is involved with MDI who are extremely amazing to her. Every month they send a volunteer who calls to Grace and brings her where ever she would like to go. This seems to be the only support organisation. I attended along with my sister (graces mom) a information day with MDI in Dublin last year but unfortunately only 4 mothers turned up and I felt there could have been a lot more gained from it.
At this present moment her parents are at the start of building an extension on to their house as they have no bedroom downstairs so my sister is trying to research what equipment and devices are out there to make graces room more accessible for her. She also had a meeting today with her school as adjustments will have to be made there for Grace also before she starts.
Regarding Graces health thank god at the moment she seems to be doing well for the last few weeks, although any flu or cold that her ventilator won't cure she has to go straight to hospital every time for an X-ray of her chest. Sometimes she has to be admitted. Thankfully her last admission was just before last Christmas. From what we know grace is the only child with sma type 2 living in Mayo and Connaught.
How old is your daughter? How is she keeping?

evica

Thank you for your answer.
My daughter is 2 and half years old now. She is fine. We are attending to the Enable Ireland in Dublin, and she got OT, PT, every week and speech and language therapy sometimes. Also I have found a good physiotherapist for her, as she need stretching, and she need to do exercises as well.
Did your niece get physiotherapy and Occupational therapy in Mayo? Do you have Enable Ireland over there? Because the Enable Ireland should support her with equipment and she should get therapy as well.
Have you heard about the Isis project? If you can give me your e-mail address, we can talk privately as well.
Take care and I hope we will keep in touch.

Eva

Ms.Cor

Hi Eva,
Thanks so much for replying
Grace does attend Physio once a week and OT are also involved but we have found the resources in Mayo to be very limited as to what Graces needs are.
No we have never heard if the Isis project.
I was talking to my sister lorraine (graces mom) and she told me to give you her e.mail address so ye can discuss the girls condition further and maybe this can be of benefit to ye. I know my sister wouldn't mind in the slightest. I know she was finding it hard to find out entitlements etc. with caring, work,allowances, even drivers permit etc. her e.mail address is lorraineomalley@hotmail.com
Hopefully she can be of some help and visa versa.
Thanks again for replying and I hope your daughter remains well

evica

Hi Ms. Cor

Thank you for the answer. I will send e-mail to your sister.

Thanks again.

Eva