@ Spinal Muscular Atrophy

Monday, September 5, 2011

Ramai bergembira di Hari Raya ni. Tapi jangan lupa pada  yang sedang menghadapi dugaan. One of my friend - anaknya menghidapi spinal muscular atrophy. Penyakit ni takde cure. If sesiapa tahu group support or kawan-kawan yang anaknya menghadapi masalah yang sama. Harap dapat email ibu di babyibu at gmail dot com. Terima kasih. Mari kita doakan semoga semuanya dipermudahkan untuk anak ini. Ini email dari ibunya.

Dear Family and Friends,

We are sorry to have to share some very sad news with you. Last week on the 15th August 2011, Branden, at the age of 13 months,was diagnosed with spinal muscular atrophy. SMA is a neuromuscular disease that affects the nerves controlling respiration and movement. Unfortunately there is no treatment or cure. We were not aware that we are both "silent" carriers of this genetic disease.

The life expectancy of infants with SMA varies from weeks to many years, but Branden’s doctors did not give any time frames for him. SMA currently limits his ability to sit without support, crawl or even roll over. Fortunately Branden does not yet need any special medical intervention, and the first respiratory tests show that his breathing is not as bad as we initially thought. Further sleep and respiratory tests need to be done soon. For now, Branden depends on a wide range of therapy (physio, occupational, speech, nutrition/diet) and medical care (neuromuscular, gastrointestinal, respiratory, orthopaedic, paediatric), to give good support to manage his breathing, eating and nutrition, movement and daily activities.

The better news is that Branden is cognitively normal. He is cheerful and ready with a bright and happy smile, has a cheeky nature, loves to engage with people and disarms everyone with the sweetest eyes, and yabbers when excited. His fine motor skills are also quite good. Branden loves smiling faces, listening to people talk and read to him, music, his bath time, swiping on the Ipad, and TV time.
His happy and positive nature gives us strength. Also important to us has been the support and compassionate care provided to Branden and us by his medical team, and our family and friends. We cannot emphasize enough how important everyone has been for us, to help us overcome the many challenges we face coping with SMA.

Obviously, we have endured a difficult week. It's been an emotional roller coaster, and we realize that the ride will be bumpy with many ups and downs. Overall, however, we feel we are coping reasonably well. We make it a point to enjoy every minute we have with Branden, and know that taking good care of him is the most important thing we can do for him and ourselves. Jaden cares deeply for his brother, and has shown remarkable maturity to cope with what's happening. He imparts his energy, cheers us up, and surprises with his emotional maturity. We will definitely ensure that Jaden continues to receive the love and support that he needs at his young age.

We ask for and deeply appreciate your prayers to keep Branden’s breathing strong and healthy, to slow down the deterioration of his nervous system and muscles, and for a cure to be discovered soon. It will so helpful if you can put us in touch with any support group in Malaysia who have experience with SMA kids, or families who experienced and managed SMA in their lives. Unfortunately awareness and support for SMA in Malaysia is poor compared to many other countries, and we have not yet been able to reach out to other families or support groups.

We welcome hearing from you and seeing you, just as we would in good times. We hope you understand why we are writing rather than calling you. We want you to know what is happening in our lives, but this is very difficult news to share.

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