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EDITION 701 :: 09/08/2013 - 22/08/2013 :: ISLAND CONNECTIONS O nce upon a time there was a nor- mal, happy family, studying and working and living in an apartment in Los Abrigos. Gwen and Carl were self- employed. Gwen had her own cleaning business and Carl was a partner in a building firm for over 10 years. They moved their family of three young girls to the Islands many years ago, their last two children, Aaron and Kitty, were born here. Nine years flew by in Los Abrigos and they started to experience problems with their only son, Aar- on. For a few years Gwen and Carl thought he suf- fered from flat feet, and from a few psychological problems caused by bully- ing by another child in in- fant school. Aaron wasn’t growing as quickly as oth- er children, he seemed to fall down a lot, although he was quick to get up again, and the stairs were a prob- lem. However, in the end, and despite claims of mol- ly-coddling him, which ac- tually involved the locum doctor at the health centre throwing the orders for hospital tests at her, Gwen decided she knew her son best and insisted on inves- tigating what was happen- ing. The results were every parent’s nightmare, a dis- ease which at the moment means their son cannot be expected to live much be- yond 30 years old, Duch- enne Muscular Dystro- phy. The condition affects around one in 3,600 boys and is currently incurable, but both parents are thor- AARON TYLER BANNISTER The Teddy Bear Project curtains weren’t tied back a certain way. I thought, ‘for Christ’s sake, my son’s dying and all they are wor- ried about is how their cur- tains are tied!’ I packed it in.” Seeing the affect that the constant stress was hav- ing on his wife, Carl took a side step from his busi- ness to help her, intend- ing to return later, but the crisis hit, his partner sold it all and he was left unem- Canary Islands Carl and Gwen accompanied and living where they are bus travel to and from the hospital and to physio would be a horrendous ordeal. Financially they could be better off moving back to the UK, and it is some- thing they have discussed, but experts here have told them that it would cut down Aaron’s life expect- ancy. More cash v more time for their child – no contest! So, reluctant as they were, and continue to be, despite their pride and in- dependence, Gwen and Carl have had to accept help from others. Unfortunately help can be a double edged sword. Whilst the majority of the expat population are be- hind them 100 per cent, there are always one or two who find fault. It doesn’t seem to matter how many hours they work at their various part-time jobs, if Carl is seen having a pint, the kids order a pizza, or their daughter is invited (and paid for) by a friend on a trip to Barcelona, there are those who think and say – “they’re doing that with my money”. It simply isn’t true. All the money raised for Aaron, goes to Aaron. If a cure is discovered tomorrow, they want to have the cash to be able to send him wherever he needs to go, for now they are building up good experiences and memo- ries for him. Meanwhile, this family has a right to a life! In the meantime, this family gets by on very little income, with a little help from social services and a lot of juggling of the family budget and they have the right to a little normalcy in their lives. They cannot be expected to live like lep- ers or recluses, only going out of the house when they are invited to fundraisers for Aaron. Their current project, which will help not only their son, but others too, in addition to reducing their reliance on outside financial help, is The Ted- dy Bear Project. They are trying to create a day centre (with plans later for live-in respite) for disa- bled children - a resource centre for help, informa- tion and putting people in touch to share experiences and problems. As well as using the pool, adapted toys and an adapted pet- ting zoo, the kids will get together with others fac- ing similar challenges and as Carl and Gwen say – and know better than most – every parent needs a break some time. They have already con- verted a garage into a lodge, hopefully for rental, and there are a multitude of plans for the rest of the land, which will bring in in- come without affecting the time they can spend with Aaron. Bed and Break- fast for hikers and bikers, possible camping sites and maybe, eventually, log cabins are all being con- sidered. Finance will be sought in the near future to purchase the property if possible, which will be put in a trust in Aaron’s name for perpetuity. Gwen and Carl and their family and friends contin- ue to fight for Aaron. All they need from the rest of us is a little uncritical help and understanding. oughly up to date with all the breakthroughs in the international scientific community and as their specialist confirmed there may just be a tiny light at the end of the tunnel for this disease. What remains to be seen is whether or not the breakthrough will come in time for Aaron - the un- certain rate of progress of Duchenne’s is one of the heart-breaking fac- tors. Carl’s motivation is to “keep Aaron going un- til they find a cure”. Gwen confirmed, “In one way it was a bit of relief as we finally had something to fight against”: the disease had a name. Their daughters, the school, and medical spe- cialists at the Neurophysi- ology department in the Nuestra Señora de Cande- laria hospital, have been very supportive and so have a large group of ex- pats who have made dona- tions and organised fun- draising events for Aaron and his family. Apart from the psycho- logical effect on everyone involved, the practicalities soon reared their multiple heads. They needed to have more time to spend with Aaron, initially for in- vestigatory hospital visits and later for regular check ups and urgent appoint- ments when new or dis- turbing symptoms present themselves. At first it was Gwen who took on most of this additional burden, and it affected her clean- ing business. “I had to delegate and get help and then customers would call me and say, although the place was as clean as it nor- mally was, they weren’t en- tirely happy as they knew I hadn’t done it because the ployed anyway. Since then, both of them have worked at innumera- ble part time jobs, in some cases up to three or more at a time, to try and make ends meet and still be avail- able when their son needed them. A different home was also needed, cheaper and preferably without stairs and, thankfully, through a contact of their daughters, they have found what seems to be the perfect property. An added plus is a small pool which is essential for Aaron’s physiotherapy to help keep his muscles from wasting away. They had waited six months for the social services to arrange for one hour of pool use a week. They have to run a car as they are not entitled to ambulance use because as a minor Aaron has to be This family has a right to a life!
