Precious Gems 57 – Angels still in training

After a year of not visiting patients, due to COVID-19 safety measures, I was excited to be able to visit families again. I was doubly glad to find out that I would be visiting Adeline and her boys again, after nearly four years.

If you have been following my Gems stories, you may remember Adeline* (Angel in training in Gems #16 published in Aug 2017), mummy to Timothy* and Anthony*, who both have Sanfilippo syndrome, a metabolism disorder that prevents the body from breaking down long chains of sugar molecules. The disease is an inherited condition and causes significant neurological symptoms. IQs may be below 50 and most people with Sanfilippo syndrome often only live into their teenage years, although some live longer. Symptoms include blindness, inability to care for self, mental disability, seizures and nerve damage. It is a progressive disease that will eventually require wheelchair use.

During my first visit, Timothy, then 20, was already blind. He needed to be fed and changed. Anthony was 15 and still walking. Both were under our StarPALS service.

Timothy is now 24 and has since been discharged from StarPALS, since his condition is stable, but Anthony, now 19, remains in our service. Timothy is still in his wheelchair and quite unresponsive. I did not notice much difference from four years ago. But the change in Anthony was much more significant. He used to walk around and had a curious streak in him, peering into my handbag then and had tried to use our nurse’s stethoscope. He has since grown taller, slightly plumper and is now in a well-padded wheelchair. He kept bending his head forward and hitting his head on his tray table and a pillow was put on it, to prevent injury to his forehead. Recently, Anthony had been experiencing a series of seizures, which worried everyone.

Dad Terry*, whom I did not meet on my first visit, has since retired and was at home. He reminisced about how Timothy was able to speak 100 words when he was two years old, while Anthony never spoke since birth. He said that Timothy was the quieter of the two and was never responsive to him nor Adeline, while Anthony was able to follow motion and was somehow able to respond to both parents when they were around him. The family continues to take evening strolls with Oscar, their therapy dog, who is now four years of age. During my first visit, the family had just bought Oscar and he was then a little puppy. Now, he is a fully grown Labradoodle, with a whole head of curly brown and white fur – a very cute and cuddly dog. Adeline told us that Oscar will insist on going for strolls with the two boys and would wait patiently by the door every evening at the same time, rain or shine.

Not once did Terry nor Adeline lament about their circumstances, but remained positive and strong for their two sons. Both parents spoke gently with their sons, even though there was little to no response. I did not see any change in the way Adeline looks after her sons, remaining always cheerful. Both parents constantly hugged the boys, fussing over them, cleaning them as they drooled. They are ’24 hour’ parents, who meticulously looked after the boys’ every need and who lovingly doted on them. Both are firm believers that they will continue to be guided and that they accept what is given to them. I am so touched by the love and patience of Terry and Adeline for their sons. I have a lot of admiration for both parents – two angels still in training and in my opinion, are definitely already there! Jiayou Terry and Adeline!

angie