Cariad Rose Howat
Cariad is a 10 year old girl. She goes to school, watches too much television and loves shopping. Getting her out of her bed on a weekend is a nightmare and getting her to bed on time on a school night is a song and dance. A typical 10 year old!
The difference between Cariad and other 10 year old girls is that she has been told by professionals, at one time or another, that she wouldn't live to do any of this. We have been told that she wouldn't be able to read, write, speak without the aid of communications devices, use a computer, be in any way independent: even experience pleasure or pain or live beyond the age of 2. That is the lot of a child with Spinal Muscular Atrophy (type 1). I am very happy to say that she has done and can do all of these things - through her grit determination and our philosophy of normality and giving her a chance. SMA type 1 is a devastating condition - if you really want to know the 'official' prognosis, click below:
Cariad is physically disabled with weak muscles, including her respiratory system - she cannot sit unassisted and without the aid of ventilation. She spends most time laying down on her back or side and requires others to turn her, look after her airway and secretions when off the ventilator (etc. etc.). A chest infection can (and has) seen her rushed to Intensive Care as an emergency.
OK. Not a great picture (it did start with positive stuff!). But as you digest what SMA means, do picture a girl who is determined to strive for 'normal'... or even 'exceptional'. You see, the troubles, hassles and difficulties aren't important. It's that we can go shopping and cause as much fuss as the next family. She has sleepovers in the living room in a tent. She plays games and friends over. Cariad even sometimes does her homework!!!
There are lots of kids with lots of conditions that they have to live with - Cariad is not unique in being a determined, brave and very clever child. Our concern is not just for Cariad, but also for the others. That is why, once we are done raising money to make Cariad's dream come true we will strive to raise money for a charity who aims to make all disabled and disadvantaged kids get the same chance.
We think it's worthwhile.
Jez Howat (Cariad's dad)