Recently Rafael underwent a comprehensive stem cell treatment for his muscular dystrophy, a condition which has greatly impacted his quality of life since he was 12 he fell down and broke his leg while at a family gathering. Below is Rafael and family’s video testimonial from his third and latest stem cell treatment. English subtitles can be found by clicking ‘CC’ or turning them on in the settings.
Below is the English video transcription from Rafael’s treatment testimonial.
Rafael’s physiotherapist: I have been Rafa’s physiotherapist for twelve years. When he started with me, he could walk. It is a tendency of Duchenne’s muscular dystrophy to lose strength and gradually stop walking and we followed this tendency step by step.
Rafael’s father: When he was 12, we went to a party and when Rafa went to the toilet, he fell down and broke his leg. From then, he started to use the chair. Rafa’s arms started to become weaker, less power to pick things up, feed himself, drink water, he had to start using a computer to write, because he couldn’t keep up with the lessons and he had a lot of difficulty getting around.
Every year, it became more difficult for him to do his activities. In Brazil there is no stem cell treatment, and we, thinking of Rafa’s well being and getting better,
had an opportunity for him to get better,
we analysed it, we thought about it…
We started a campaign to raise money for the treatment. As a result, we started booking his treatment through Beike and its representative. Rafa has done the treatment in Thailand with Beike three times. This is the third time. Rafa has had improvements with the power of his upper limb muscles, improvements with his trunk, his balance, and his self-esteem has improved a lot.
He used to feel a lot of muscle pain, pain that, after the treatment, we don’t see anymore.
Rafael’s physiotherapist: Last year, when I had the opportunity
to come with them for the treatment, I wanted to see up close what this treatment is, including the intramuscular injection of stem cells on his vertebral muscles around the spine. And I was really impressed, not only with the stem cell treatment but with all the therapies in general. Rafael is a completely different person.
Rafael’s father: During this year’s treatment, we have already noticed some improvements. He used to feel a lot of pain in his ribs and now this has eased and we believe that after approximately six months, he will get more improvements with his muscles, more power in his hands and arms, to keep on doing everything that he has been able to do here, like being able to lock his wheelchair – he’s already doing that: locking and unlocking his chair – things that he was not able to do before and we hope that he keeps improving.
Rafael’s physiotherapist: The other therapies, such as physical therapy, aquatic therapy, occupational therapy and the others, are very important in activating the cells and in stimulating the muscles to work.
Rafael: My daily schedule is full of exercising. I like aquatic therapy because that’s where I feel free, independent and happy. It’s where I can move around more easily and improve my strength. I can relax my muscles.I feel free.
Rafael’s physiotherapist: The occupational therapy makes him have more power in his arms, more mobility, coordination and more motor function as well. He does exercises like picking things up with the tweezers, which has helped him a lot.
Rafael: I like it because it helps me maintain what I can do today and I get very happy because the occupational therapists motivate me to do the exercises.
Rafael’s physiotherapist: He has a will to live much stronger than he had at the start. Until late last year, he could not hold a glass to his mouth, he always had to use a straw. Now he can open a refrigerator, fill his glass and drink the water. For some people it might be a small thing, but for us this is a phenomenal gain. Now he can get an object when it falls onto the floor and get back into his wheelchair. This makes him more independent and independence for an 18 year old boy is everything, and for us, it makes us even happier.
Rafael’s father: Rafa has lost around 30 kgs. Rafa’s quality of life has improved a lot. His self-esteem is very good. We are very happy to see him this way.
Rafael: I want to be stronger and more independent and with my quality of life,
I hope I can achieve whatever is possible. I can talk better than I used to.
It’s easy to see that I am happier and more lively.
The hospital staff are very warm people, always playing, very nice people.
Rafael’s physiotherapist: All the professionals, from the drivers to the doctors, physical therapists, occupational therapists, Beike’s representatives, the patient coordinator – everyone – is very patient with us. They have a special attentiveness, a kindness, that makes us feel at home, even on the other side of the world.I recommend this without a second thought because it gives hope to people that have no hope, with diseases with no hope.
Maybe it’s not a cure, but it is a better quality of life. We know that he might not be able to walk again. And neither is that our goal. Our goal is for him to live. To live and live well, live with quality. And that is what Beike’s stem cell treatment is providing us with at the moment. I am certain of this.
I get very emotional every time I talk about this, because we had to fight to get here. We worked for a year to be able to be here, to get to do this treatment, to make Rafa’s life better. Good, Rafa, I cried. Are you satisfied?
Rafael’s father: I want to tell everyone that is watching right now: everyone that had a difficult situation like we did with our son, one way or another, take your special person to do this treatment that we are doing. Don’t ever give up.
I would also like to thank you for all the support we have had, from Beike’s representatives, hospital staff, everybody, and I want to tell these people that here we have had everything. The people who will come here for treatment will have all the support needed to continue fighting, and win. With the help of God and everybody, we will always win. That’s all.
If you want to find out more about how stem cell treatment can help you or someone you know living with muscular dystrophy, learn more by clicking below.