Megan has Mannosidosis.
My daughter Megan has mild alpha Mannosidosis. She is 22 years old, able bodied and active. Megan was keen to learn to drive and I recognise this and other interests and achievements would give her the independence she aspires to.
Most of us would want, given a choice, to be independent. Further, most of us want to be needed in some way so that others might depend on us. To some extent this feeling of independence can be achieved for everyone. If Megan can’t learn to drive or can’t use public transport? If she can’t go to the shops by herself, what other sort of independence is there? Well, no one is completely independent anyway. We are all dependent to a certain extent on the state or the law or our friends or family or public transport or the shops where we buy our groceries. How many of us would be independent if there was none of these things that we rely on so frequently. There is an independence of spirit that we can instil into our children, a positive attitude, optimism, assertiveness, determination. All these things can give us so called independence. Independence can then become a state of mind.
Some might say that as a family we’re very lucky, and I believe we are. Some might say Megan is relatively healthy and ask ‘What do I know about suffering?’ But then we are all luckier than some and not as lucky as some others. I want to tell you briefly about our experience that gave us the ability to get on with our lives and which has given Megan the feeling of independence that all young people should have. It wasn’t something we consciously did, it just happened.
When Megan was born with what was ‘mild talipes’, she had a slightly larger than normal head and she spent six weeks in traction to relocate double dislocated hips then three to four months in a plaster cast the shape of an inverted ‘T.
For Jane, my wife, it was hell. I can’t recall how I felt but I think it was something near helplessness. Jane’s hell turned gradually into guilt and now, two decades later, she’s just beginning to feel ok. Things took a downturn when Megan at 15 was diagnosed but we took a pragmatic approach and saw that in reality nothing had changed. Megan was still the same little girl as before diagnosis.
Everything medical from the moment Megan was born was considered as an isolated, mild condition and not related to any one cause. Each doctor would say ‘This is very mild (whatever), why are you so upset?’ Our GP suggested we have another child as soon as possible and that Jane should go back to work. Remember that we did not have a diagnosis at this point.
Jane’s a teacher and always good with children. A paradoxical situation which she dealt with, by all outward appearances, very well. Jane went back to work soon after our second child, Tom, was born about two years later. Had Megan been diagnosed early we might not have had Tom, who, although he carries the same faulty gene that both I and Jane carry, has avoided the unlucky ‘roll of the dice’ that causes Mannosidosis.
Megan had lots of physical and mental tests but nothing was diagnosed until she was about 15 years old. Her swollen and painful knee was the first clue. Her paediatric specialist, Mr Vic Seal (the surgeon who corrected Megan’s talipes), performed some exploratory surgery and, on finding nothing wrong, referred us to others and eventually Dr Ed Wraith at the Royal Manchester Children’s Hospital.
I have to say that had it not been for all these minor ailments, Megan wouldn’t be in such a strong position. Intellectually Megan is well balanced. As we realised early that she had difficulties, we helped her to become strong intellectually and emotionally and to cope (as much as she is able) with the real world.
I feel that, for Mannosidosis sufferers, early intellectual development is vital in order to establish stability and understanding in later life. Hearing problems, ear infections, and frequency loss can result in poor language development and poor intellectual development. Access to speech therapy to improve diction and ensuring eye contact when speaking is very important. Digital hearing aids seem to be standard issue nowadays. Megan has really benefited from these strategies.
Make your child assertive not aggressive. Make sure they can say ‘Excuse me, I have a hearing difficulty, please say that again’. Or state whatever the difficulty is. I was aware one day at the cinema with Megan, the man at the desk started to get impatient when she misheard. When Megan said ‘Sorry, I have hearing difficulties’, he smiled and became more helpful and friendly.
All the things that we take for granted and are obvious to us, we need to take a second to look at and make sure that our child understands fully. Our understanding of their needs and their understanding of us is surely what gives our children an independent spirit.