Toddling Wheels

I wrote a letter in January to a man; he is the head of servies at the local wheelchair services and rehabilitation centre.  In essence I was asking him to meet Eilidh and help us maintain her independence, but core to this letter was also my want to allow others in a similar situation to gain their whizzy wheels quickly so that they could be as mobile as possible at an early age:

"Eilidh has a neuromuscular condition which does not affect her intellect or her cognition. Eilidh is like many other children with SMA and other neuromuscular conditions and can use equipment that some disabled wheelchair users may not be able to use and at an early age when they would naturally be becoming mobile. Mobility is an extremely important element in not only the physical development of a toddler and child, but also in terms of their language and social development: we strongly believe that Eilidh’s speech and language improved as a result of her becoming independent in her Micro. Early mobility will promote self-exploration, motor learning, visuo-spatial awareness, social development, confidence and cognition. Children with progressive neuromuscular weakness will benefit from energy efficient light weight wheelchairs at an early age and I ask that you consider seeing children diagnosed with spinal muscular atrophy grade 2 or 3 early to enable them to become mobile as early as possible."

The next month I had an appointment with our OT at the centre and head of services joined us, with Eilidh as our smiling mediator:

Almost defensively, I ask "I hope that you don't think that I'm being a bolshy parent?" and what i heard in reply surprised me, "No, I agree with you".

Wow!  the head of services agrees!

And so we talked about Eilidh and her experiences with her Panthera Micro - oh, how she rocked that chair! -  and now her Bambino.  We talked of her Action3 Junior and how it really wasn't suitable for her to use and maintain her independence because it was too heavy and cumbersome.  He told me that I had done a good job - too good! - because they would be unable to source a lighter chair for Eilidh, but they could look at the Action3 Junior and see if they could adapt that.

By then the most important part of the conversation was about providing lightweight self-propelling chairs for newly diagnosed SMA children.  We talked of the cost of the chair - which he didn't think was unreasonable as it is comparable to the cost of an adult chair - and I suggested perhaps having a bank of them as they could be reconditioned and reused.  He agreed but did state that parents  are often very reluctant to use reconditioned equipment for their children - surely it would be better to have your child exploring their environment early than worrying about the newness of the equipment?  We talked of the small number of children in Scotland with neuromuscular conditions which would mean that the initial outlay for panthera chairs would be costly - but what cost can you put on a child's independence?  Not wanting to be beaten by cost, I suggested a Scotland wide bank of chairs and he said that it would be something that the wheelchair services could certainly consider and he would discuss it further with the other centres.


With the adult chat out of the way, Eilidh was able to show off her cheeky, stubborn, independent streak and we all walked out to reception to say our goodbyes...



I might not have realised improved independence for my daughter, but hopefully - fingers and toes crossed - wheelchair services will seriously consider providing newly diagnosed children with lightweight manual chairs to toddle and explore with.  I just need to go and chase him now for his written reply...

X-Factor-Tastic!

If you are one of the many (or few!) who don't watch X-Factor...

The X-Factor Finalists, along with JLS and One Direction have covered Rose Royce's Wishing on a Star and the song will raise money for children living with a life shortening disease.  Together For Short Lives and 50 other charities will benefit from the proceeds from the sale of the single .  These charities include Jennifer's Trust which is the only charity in the UK who solely offer services for those with SMA and their families and friends.  Maggie, an Outreach Worker from JTSMA,  was invaluable to us in the early days after Eilidh's diagnosis, providing information and much needed support at a difficult time.

23,500 children and young people in the UK are unlikely to see adulthood; these children, with their families and friends, live with their disease every single day and it not only affects them physically but also mentally and emotionally and can impact on every aspect of family life.  Many, if not all, will need additional support and the charities benefiting from the sale of this single focus on improving quality of life for the families and providing help and support.  These charities enable families affected by life shortening diseases to cope with the everyday.

"Life is precious.  You only get one shot.  You live your life as if it was your last day and basically we try to do that every single day of the year."

So, please, please, please help these children live each day, with the love and support of their families and friends, as it it were their last; buy the single and make a difference today...  Life is so very precious...

More information about the Lloyd Family - as featured on the link above - can be found here.

11/11/11 is coming...

Nick and Diane are getting married!

Whoopeeeeeeeee!!!

On the 11th day of the 11th month of 2011 they will become husband and wife and we wish them much love, laughter and happiness, now and always.

Nick and Diane suggested to us a while ago that they would like to dedicate their wedding list to Eilidh: they have been living together for over 10 years and do not feel that they need or want anything and would much rather that their guests donated to Eilidh and The Whizzy Wheel Fund. They have 2 little girls, one who is just about the same age as E and they cannot imagine what we are going through and want to support us.

We are blown away and moved to tears by their kindness; so if you are visiting here to donate to their wedding list, thank you and we look forward to seeing you at the wedding to celebrate Nick and Diane's marriage.

To donate, please click on the button below and it will take you through to paypal

A Big Thank You!

We need to say a huge big THANK YOU to Diageo for matching the sponsor monies raised by Mary Colgan during the West Whizzyland Way Walk.

Mary raised a staggering £1000 and Diageo have matched this and donated  £1000 directly to the Muscular Dystrophy Campaign.

Thank you Diageo for supporting such a worthwhile charity from all at Whizzy Wheel Central!



A is for August & Awareness

two candles by h0pefulmummy

August is gone now and the days take on an autumnal feel. August was Spinal Muscular Atrophy (SMA) awareness month in the States. Families of Spinal Muscular Atrophy has been coordinating a National Awareness Month for SMA since 1996. They hope that by raising the public's awareness of SMA they could realise increased resources for SMA research and better care for SMA patients. The sad truth is, the majority of people, including doctors, nurses and allied health care professionals, do not know about SMA until it directly affects them.

On Saturday 13th August people all over the States lit candles as the sun set to remember those lost to SMA and to give hope to those still living with the disease. I lit two candles that night - one for Eilidh and one for all the other children who have lived or who are living with this genetic disease.

1 in 40 of us are carriers.

As a doctor my first experience of SMA was in a neonatal unit; the baby boy had SMA 1. My next experience was sitting in a neurology clinic with my daughter, "She probably has a myopathy or a muscular dystrophy. It could be Spinal Muscular Atrophy." SMA doesn't happen very often in the lifetime of a doctor. In my lifetime, however, I see it every day.

Approximately 100 new cases are diagnosed each year.

Why don't we know more about SMA in the UK? To be honest, I'm not very sure. SMA is one of the most common life-threatening inherited diseases, second only to Cystic Fibrosis (CF) and yet we are very much more aware of CF as a disease and the affect it has on those who have it. 1 in 25 of us carry the cystic fibrosis gene; 1 in 40 the SMA gene. Approximately 260 babies are born each year with CF; 100 babies per year are born with SMA. In CF, as in SMA, in any pregnancy where both parents are carriers there is a 25% chance that the baby will have CF. Only half of those living with CF are likely to live past their late thirties: SMA affects individuals differently with SMA 1 children maybe living until they are 2 and SMA 2 children will perhaps live until adulthood.

So, knowing that Cystic Fibrosis and Spinal Muscular atrophy have similar genetics and that they are both life-threatening, I'll ask the question again, why are we not more aware of SMA in the UK?

It's a question I have asked myself frequently since Eilidh was diagnosed with SMA. There seems to be so little awareness of SMA within the general public but also, more worryingly within medical professionals and allied staff. What can we do to increase awareness, promote and fund research and raise money to support those living with SMA? I'm not sure; I need to consider this seriously and take action - small steps towards making a difference. Do you have any suggestions? Did you know anything about SMA before reading this blog? What do you know of CF? Are you surprised that so many similarities exist between SMA and CF? I certainly was when I read up on the hard facts. Now that I know though, how can I change our, the public's, way of thinking towards SMA? Let me think it over...

"As one person I cannot change the world, but I can change the world for one person."

Paul Spear