It is 3 years since Luke received his bone marrow transplant and he has changed so much since then, and made so much progress. When deciding to do the bone marrow transplant, we were unable to find much information on what had happened to patients with alpha-mannosidosis after a BMT. We plan to continue to post an annual update on Luke’s progress for other families wanting to see the outcome of BMT for alpha-mannosidosis.
This last year has been a long list of milestones and achievements for Luke.
Some are simple things we thought he may never do like riding a two-wheel bicycle! He learned to do this last October, and has become really good at riding around on his bicycle without training wheels. When he was first diagnosed, we were sure we would have to get a specially adapted bicycle for him to ride, even as an adult. To achieve something so straightforward for many other kids, has been quite a major milestone.
His strength and stamina are much better than ever, even his helpers at school have commented on how much stronger he is than 1 year ago. He is physically active and walks the 1km to school, most days when the weather is good and home again at the end of the day. He will often then have a friend over to play, or go over to play with a friend. That kind of stamina is amazing, considering that 4 years ago, we would bring him home from school after half a day, because he was so tired.
Luke attends a mainstream school where he receives part time academic support from a support worker in the classroom. Luke repeated grade 2, since he missed so much of the school year during his Bone Marrow Transplant. However, at the end of his grade 2 year (last year) he was reading at a grade 3 level, which we were so proud of. Although his writing and drawing skills are still below grade level, Luke’s fine motor skills have improved a lot in the last 3 years. He still struggles with math, and finds that quite hard, even though we do a lot of extra work with him, at home and at school. It is quite amazing that he has been able to keep up in most areas with others at school. Repeating grade 2 was a great decision for him, and we are glad to have done it, as it has given him great confidence academically.
Socially, he is still shy, but has started to come out of his shell quite a bit. He has made quite a lot of friends at school, and it seems like all the other kids know him and say hi to him all the time at school. He has developed most of the similar interests to kids his age, and enjoys Lego, Star Wars, Video games, watching TV, and jigsaw puzzles. He is able to build Lego sets for his age level unsupervised. And actually builds some quite complicated ones.
Amazingly, over the last 4 years, his hearing has improved! We are not sure what has caused this, or whether it is as a result of the BMT. His ENT doctor noticed that the level at which he could hear speech, improved from 40 dB, to 20 dB over the last 4 years. (20dB is considered normal!). His high frequency hearing loss has improved from 70 dB to 40dB. It is significant and very encouraging. At his last audiology appointment, his audiologist turned his hearing aids down, as his hearing had improved so much.
His Eustachian tubes are working properly now to drain fluid from his middle ear, which means he does not get fluid build up in his ears, and does not get frequent ear infections (although he just got one yesterday! – but it was his first one all year).
His immune system seems to be much stronger, and he now gets just 2 or 3 colds over the winter, instead of being sick almost constantly throughout the winter.
And finally, his enzyme levels remain high, well inside the normal range and the highest in our family and we now check these every 6 months.
Luke still has his health challenges, and he still has to overcome a lot more than the average child. But he is continually improving every year, when we were told the opposite would happen, it is quite clear that the BMT has changed the course that Luke has to follow and has made a significant difference in his life.