We hope you have found helpful information in our Recently Diagnosed with SMA section > and / or the Living with SMA pages for children and for teenagers.

Some parents say their experiences of bringing up a disabled child have strengthened their relationship with their partner. For others it can be a really testing time. Different emotional reactions and different roles can add to tensions and stresses. These resources may be helpful:

• Contact for Families With Disabled Children:
  • Looking after your relationship >
  • Relationships and Caring for a Disabled Child (pdf download) > or phone 0808 808 3555 to order
• Relate > – provides face-to-face, phone and online relationship counselling services. Some Relate centres offer subsidised counselling sessions.

Grandparents often contact us when a grandchild is diagnosed with SMA. They want to do all they can to support their child, grandchild and family. At the the same time they are struggling with their own reactions and emotional and support needs. 

The Recently Diagnosed section of our website > may be helpful for you to read, particularly whichever of the first three information sheets, ‘Hearing your…’ applies to your grandchild. These talk about how and where to find possible support.

Contact have advice for grandparents > that may also be helpful.

You can find advice about financial support and many other topics in the Children > or Teenager > sections.

In almost all families, brothers and sisters have their ups and downs. Sometimes you love them. Sometimes they get on your nerves and annoy you. You seem to always be arguing.

When you have a sibling with SMA, your parent(s) have to think about their physical care all the time. They can often seem to be living at the hospital.

Times when your sibling is very unwell are distressing for everyone. But all the time spent on them can make you feel left out, jealous and less important.

Sometimes you have to look after your sibling more than you would if they weren’t disabled. Sometimes you’re happy to help, other times you may just feel resentful.

All these different feelings are quite understandable. But you may sometimes feel guilty about them. So it’s good to talk to your parents or another adult. Perhaps an aunt or uncle or good family friend.

There are also organisations that really understand how you may feel:

We hope we have covered most of the topics that partners ask us about in the Living with SMA section for Adults >. Please let us know if anything is missing.

Friends are invaluable supports at the time of a child’s diagnosis. As a friend you will want to understand:

• more about the condition
• the impact this might have
• how your friend may be feeling
• how best you can help.

You will also have your own reaction and emotional and support needs.

The Recently Diagnosed section of our website > may be helpful for you to read, particularly the ‘Hearing your Diagnosis’ information sheet that applies to the family you know.

Friends are often a really valuable source of both practical and emotional support. For example, you might be able to:

• help with household chores
• look after other children in the family
• walk the dog.

Some families find it helpful to take holidays or short breaks with family or friends. Additional adult support can be very helpful:

• to entertain siblings
• help share the daily tasks
• for back-up in case of an emergency.

Friends often comment that they feel inadequate at the time of diagnosis, not knowing how they can help. Some organise fundraising events as a practical way of showing their support. This may be to raise funds to help the family with the additional expenses they face. It may be to raise awareness of SMA and support a charity. Our Support SMA UK >  pages may give you ideas.