A member of my family has been diagnosed with SMA, what do I do now?

There is a lot of help and support out there. The hospital should put you in touch with the majority of the following people, but if they don't, make sure you ask. These people will make your families life much easier, and also prevent a lot of hospital admissions. If you are ever unsure of anything and cannot speak to your community nurse, phone your childrens ward. You should have open access and be able to be seen at any time of day or night.

Community Nurses
These nurses will visit you regularly and help support you with things such as NG feeding (tube feeding).


Night Nurses
If you are a single parent or having difficulty coping through the night there may be a possibility of a night nurse to help out.


Hospices
There are special children's hospices which can be used for respite care, to give parents a break, many also arrange day trips for the family as a whole.


Contact Families
Talk to other families who have been in the same position, contact the Ally Cadence Trust for SMA for your nearest family support.


Health Visitor
For additional support and to check your child's weight regularly.


Counsellor / Bereavement Counsellor
To talk to you about the diagnosis/prognosis and to offer support to children and other family members.


Physiotherapist
Community based physiotherapists will show you how to do little exercises with your child to help them move their secretions on their own. If there is need for a physiotherapist whilst in hospital they may need to help the child move any secretions by using a suction machine. A portable version of this machine is often provided for use in the home and while out on day trips.


Occupational Therapist
Help your baby to reach their upmost potential.


Genetic Counsellor
As SMA is a genetic condition an appointment can be made with a geneticist. They will discuss possible implications for any future pregnancies.


Ally Cadence Trust for Spinal Muscular Atrophy
We will do our very best to help you both emotionally and financially. See the "Mission Statement" on the home page.

If your child has been diagnosed with SMA Type 1, the doctor who is caring for your child will sign the forms for Disability Living Allowance under the Special Rules (United Kingdom only). This means there is no qualifying period, you are entitled immediately, though it cannot be backdated. You will need to fill out a few details and sign the forms but most of it will be done for you.

You are entitled to DLA as soon as your child needs extra care above that of a typical child so we urge you to apply for this benefit as soon as you possibly can, you do not have to wait for the diagnosis first. Application forms are available from the Post Office or you can contact the DLA helpline;

Tel: 0800 882 200 - Monday to Friday, 8.30am to 6pm / Saturday, 9am - 1pm

Address: DSS, PO Box 50, Heywood, Lancashire, L10 2GF