Advocacy

Physiotherapy Can Lead to a Better Life for Afifah

by Persatuan Kebajikan Ceriajaya Kuala Lumpur dan Selangor (WeCareJourney)

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THE PROBLEM


My name is Nur Afifah binti Mat Nawi and I am 11 years old. I was born with Spinal Muscular Astrophy (SMA) Type 2. This means that I can’t walk, I need help to sit up, my spine curves side-to-side (scoliosis), and I have weak respiratory muscles that can be life-threatening.

 

I require round-the-clock care, but my parents love me so much, so they never complain at all. I spend most of the day with my dad and my siblings. Sometimes my dad feeds me at mealtimes since I cannot move on my own. Because of my condition, I sometimes skip school when I am sick. However, I love learning new things and having fun with everyone!  

 

To keep myself well, I have to go through a lot of physiotherapy. I have gone through many physiotherapy treatments at the rehabilitation center, but recently I have stopped doing the therapy. This is because the physiotherapy given is just once in two months and the therapy is not very effective for me, as an SMA patient, as I need further physiotherapy to ensure that my scoliosis does not get worse over time and my muscles are not tight, and I can continue to use my hands for a longer period. My parents have to close their stall which sells fried bananas when they have to bring me to the hospital for my physiotherapy. This means they will have no income for the day.

My parents are worried because without continuous physiotherapy, my condition will get worse as SMA is a progressive disorder.

 

THE SOLUTION


Me and my parents would be so grateful if we could obtain a home-based physiotherapist to assist in my care. Through this serviceI can continue my physiotherapy treatment at home and it is very convenient for me and my parents as we do not need to go to the rehabilitation center just for the therapy. Furthermore, the physiotherapist also can train my family with basic care such as positioning, sitting, stretching with a simple guide. 

I am hoping to improve my motor function and increase my quality of life. My parents will have peace of mind if we could get help to obtain home-based physiotherapy.

 

Cost Breakdown:

 

Items  Cost (RM) 

Fees for 1 child = RM100 X 8 session X 6 months  

 4800.00

 

THE IMPACT


A home-based physiotherapy program will be organized by Persatuan WeCareJourney.

Persatuan WeCareJourney will subsidize RM100 for each child with SMA. Each child is required to have at least one or two guided physiotherapy sessions by the physiotherapist each week and to continue to do the physiotherapy by themselves every day.

I hope you can help me raise enough funds for my physiotherapy for 8 times a month for 6 months. That will cost my family RM4800.

If you donate RM50 and above I will send you a pack of 12 pieces of Thank You cards from Persatuan WeCareJourney

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About the Organization/Project behind this Campaign

Persatuan Kebajikan Ceriajaya Kuala Lumpur dan Selangor (WeCareJourney)


Home-based physiotherapy will be organized by Persatuan Kebajikan Ceriajaya Kuala Lumpur dan Selangor. WeCareJourney is dedicated to the treatment of spinal muscular atrophy (SMA), the number one genetic cause of death for infants. An SMA diagnosis can be overwhelming, and we give patients and families the information and resources they need to live active, engaged, and hopeful lives today. We are committed to respecting and fostering diversity and inclusion in the people we help. 

OUR VISION - To champion C.A.R.E and support for families with SMA & disabilities. 

OUR MISSION - Caring and Connecting families with SMA and disabilities to support by taking Action and creating Awareness, promoting Readiness and Responsibility, and Empowering affected families through Education.