Links
The following pages offer practical support, experiences and stories from families around the world, and much more.
Dads United - I am a committee member for "Dads United", which is a support group for fathers who have suffered the loss of a child. Originally set up through Little Bridge House (see below), it is now run by a committee of Dads, although we remain closely linked with Little Bridge House and the other hospices of Children's Hospice South West. Have a look at the web site, we do a lot of events (most of them free) like cricket and rugby matches, and we do a three-day walk each year which most dads get a lot out of.
Jennifer Trust for Spinal Muscular Atrophy - This is the British charity for people with SMA and their families. The JTSMA is a friendly and supportive organistion which holds frequent 'get-togethers' and an national conference in addition to providing many useful support services. We can't recommend them enough, they have been really helpful to us.
Families of SMA - This is the American equivalent to the JTSMA (see above). This is a large site with lots of helpful information, including the stories of families like ours and how they coped, and useful tips for making life easier for all concerned.
Little Bridge House - This is the facility provided by Children's Hospice South West in North Devon, of which we cannot speak highly enough. They provide professional care in a happy, friendly environment twenty-four hours a day. The atmosphere is more like a home than a hospice and is nothing less than remarkable. Please support Children's Hospice South West or your local children's hospice as they are paid for almost entirely through fundraising and charity, with little or no government support. You only have to see the what the children get out of staying there to know how worthy a cause children's hospices are
Dads United - I am a committee member for "Dads United", which is a support group for fathers who have suffered the loss of a child. Originally set up through Little Bridge House (see below), it is now run by a committee of Dads, although we remain closely linked with Little Bridge House and the other hospices of Children's Hospice South West. Have a look at the web site, we do a lot of events (most of them free) like cricket and rugby matches, and we do a three-day walk each year which most dads get a lot out of.
Jennifer Trust for Spinal Muscular Atrophy - This is the British charity for people with SMA and their families. The JTSMA is a friendly and supportive organistion which holds frequent 'get-togethers' and an national conference in addition to providing many useful support services. We can't recommend them enough, they have been really helpful to us.
Families of SMA - This is the American equivalent to the JTSMA (see above). This is a large site with lots of helpful information, including the stories of families like ours and how they coped, and useful tips for making life easier for all concerned.
Little Bridge House - This is the facility provided by Children's Hospice South West in North Devon, of which we cannot speak highly enough. They provide professional care in a happy, friendly environment twenty-four hours a day. The atmosphere is more like a home than a hospice and is nothing less than remarkable. Please support Children's Hospice South West or your local children's hospice as they are paid for almost entirely through fundraising and charity, with little or no government support. You only have to see the what the children get out of staying there to know how worthy a cause children's hospices are
