Please can anyone recommend a suitable toy for a 1 year old baby who has SMA (Spinal Muscular Atrophy)

[GetOrfMo1Land]

Hi

My friend has a daughter who will be 1 just after Christmas. She was diagnosed in Spring with type 1 SMA, which means that she has not any muscle control (and is getting worse), she is unable to move any part of her body other than her facial muscles weakly, and her fingers slightly. She has to have assisted feeding and breathing. Children with SMA 1 usually live no longer than 3 years maximum. However she is neurologically/mentally normal for a baby of her age, so responds and smiles beautfully and is so observant.

Obviously this is so devastating for my friends, they are worried that she is getting worse quickly. There is very little treatment for the disease, and no cure.

I wanted to ask if anyone can recommend any shops which sell visual toys for disabled babies of this type - like i say she watches things avidly and I was thinking of some sort of lightshow/projector thing which she would enjoy, which I could buy her for Christmas. I have looked but can't find any suitable stockists (and I don't really know what I am looking for anyway).

Has anyone any idea? Thanks very much.

there's something like this that you can buy various wheels for, depends on your budget really. Have a look round the rest of the site, there's plenty of stuff on there. There's also maplins that sells lighting and coming up to christmas there's alsorts of sensory lighting stuff available in the supermarkets.

sorry to hear about your friends dd, heartbreaking

almost forgot, there's also this site and hawkins bazaar is always worth a look.

Thanks so much ninja.

Yes, it is bloody heartbreaking. They have already been blue lighted to hospital many times when she has choked, because the muscles in her throat cannot cope with swallowing. She is such a beautiful baby as well, so bright and cheerful.

Maplins is amazing!

If she has any vocalisations then this is great. It lights up in reaction to sound and you can change the sensitivity.

this responds to sound and touch too.

If she can't vocalise it can be a game between baby and an adult. When she looks at the adult they make a sound or touch the toy and it flashes etc.

Oh wow at the maplin things.

I also really like the projector which you linked to Ninja - that is exactly what I was thinking of.

Thanks so much again.

I was.going to suggest the same projector as ninja. One thing that can be done with these is to project them on to the sort of umbrellas (or board things) that photographers use for reflecting - they are useful to position near the child if they can't turn to look.
I can't link as Im on my phone - but you can get them on amazon.

Otherwise just look out in the sort of gadget shops that pop up at xmas - they often have various light type things.

Hawkins bazaar has some really fun toys, really quite reasonably priced also. The toys r us website in the us, so .com not .co.uk has a section called 'differently abled' which is brilliant and lists toys by the skill which children who have additional needs may be strongest in, or need to focus on.

I am so sorry to hear that your friend are going through this, a child on a birth forum I used since I discovered I was pregnant recently lost her battle with this illness only a short time after her parents found out why she wasn't developing any ability to sit and after she suffer chest infections from aspirating. It was completely and utterly heartbreaking, and despite us having had a roughy start to parenting I have never forgotten that child, she touched so many many lives.

My little girl loves her shadow light from Argos. I can't link as on phone but it's fabulous