(Journey from 15 March 2011 –21 March 2011)
With the kind donation from Hong Kong Medical Association Charitable Trust, Families of SMA Charitable Trust arranged and sponsored Mr.Martin Ma, a SMA patient in China who is actively supporting other SMA families around China, to visit Hong Kong and learn how SMA patients should be taken care of. The following is his thank you letter after the trip:
Honorable President of Families of SMA Charitable Trust Mrs. Mei Ling Fok:
I'm very grateful for your kind invitation, which gave me the opportunity to visit your organization and receive the training in SMA patient management. Your carefully-made plan and arrangement has made my visit to the patients' home, PT center (Physiotherapy Department of John F. Kennedy Centre, Special School in Hong Kong), children hospital (Ventilation Centre in Duchess of Kent Children Hospital) and medical equipment company (Celki Medical Company) very successful and fruitful. The experience has greatly opened my eyes and enormously enriched my knowledge and understanding on SMA patient caring and their life support.
Once I got into the patients' homes, I seemed to be in the small ICUs. For the first time the life-supporting machines were so close to me. I could even reach out to touch them and feel the air flow that is delivered to help patients breathe better and sometimes save their lives. Back in mainland, all that I can do is browse through Internet pages and gain the vague ideas of BiPAP, CoughtAssist, tracheotomy, gastrostomy, etc. But here I saw clearly how the machines and medical treatment work positively on the patients and make their life different. What's more, in Celki Medical Company sales manager Mr. Enoch Ma further explained to me how to choose right models or parameters on these machines to meet each patient's specific need. But for such on-the-spot demonstration, I know I would never have been able to establish such clear and concrete ideas on these up-to-date equipments and accessories.
Although there is still no cure or treatment to SMA around the world now, appropriate management and support have been proved effective in protecting SMA patient's existent motor function, improving their life quality and increasing their life-span. In mainland China, however, many doctors even don't know too much about SMA, including those in big cities such as Beijing and Shanghai. They can give little practical suggestion or help to the families who get the diagnosis of SMA. Many parents can only take the sick children home and let the disease take its natural course. Without professional guide and intervention in breathing and feeding, the children are more subject to choking and breathing problems. Pulmonary infections often bring these children back to ICU or take their young lives away untimely. Life is just like skating on thin ice every day to these helpless parents.
But when I came to Hong Kong and saw the SMA patients living at home, I do believe that appropriate care and management can help improve their life quality significantly. With BiPAP machine or gastrostomy, the children who have difficulty breathing or feeding on their own can be discharged from hospital to enjoy valuable family time with their parents and even go back to school. All these are absolutely unimaginable in mainland now. Their counterparts can only be confined in ICU depending on breathing and feeding tube inserted through their nose to sustain their life. This causes a lot of pain on the patients' body and their parents' spirit.
Mainland now is also short of physiotherapists who are experienced with SMA patients. Due to lack of professional PT support, some children untimely develop scoliosis or joint contracture and lose the motor function which could have been maintained. Also without proper guide, some parents even force the children to exercise beyond their limit, which in turn cause some obvious or potential harm to their young bodies. But the situation is quite different in Hong Kong. Physiotherapists would not only treat SMA children according to their personal condition but also show their caregivers how to do the common PT correctly. Working together with professional therapist, parents can expect to help their child gain the most possible physical and psychological benefit.
Before I came to Hong Kong, a type 2 patient with scoliosis asked me what she could do to ease her back pain and slow down the curve. When I visited John F. Kennedy Center with the question, I got the professional answer from Mr. Tony Yeung who carefully explained and demonstrated to me that appropriate seating system and position adjustment is the key to dealing with this problem. This is just one of the examples that I cannot help mainland patients with my limited knowledge but found the answers during my visit and training in Hong Kong.
Deeply shocked by the big difference in the concept and practice of SMA patient management between mainland and Hong Kong, I'm determined to make the best use of what I've learned in Hong Kong to help SMA families in mainland face the devastating disease correctly and positively. Through our newly launched website (www.fsmachina.org), I'll share with them the ideas and choices that can help them better relieve the child's suffering, protect their motor function and improve their life quality. Also we will promote the families' communication and strive to raise public awareness of the disease through outdoor activities of our patients, encouraging more caring persons to concern and help this special group.
Working together with Prof. Ching Wang, a pediatric neurologist from Stanford University, the Armed Police General Hospital in Beijing will soon conduct a clinical trial on a potential drug for SMA. We (two caring mothers of SMA patients and I) have helped over 50 families around mainland China make the appointment with Prof. Wang to take his eligibility exam. Through the contact with the hospital, we have developed a good relationship with Dr. Wu, the Chinese leader of this clinical trial. We will seek more support from professionals like Dr. Wu not only for medical advice on our patients but also for assistance in setting up our own organization devoted to helping SMA families in mainland. We know only through more group activities can we make our voice heard by society and government, and claim more attention and help for the deserving families.
Finally on behalf of my parents I want to thank Mrs. Fok again for donating the fabulous power wheelchair to me. It gives me much more independence and mobility and greatly ease my parents' burden when I need to get around at home or go outside.
Thank you Mrs. Fok, Mrs. Yim, Carmen and Edward for making my visit in Hong Kong such a meaningful and unforgettable experience!