S.O.F.T UK provides support for families affected by Patau's Syndrome (Trisomy 13), Edward's Syndrome (Trisomy 18), partial Trisomy, mosaicism, rings, translocation, deletion, and related disorders.
Finding out that your baby has a disorder that you may have never heard of is alarming and brings all sorts of anxieties. The SOFT Booklets fulfil a desperate need for helpful, practical and positive information presented in a sensitive way. For most, our first contact with SOFT is through the leaflets and booklets is publishes.
SOFT also regularly publishes a newsletter which provides a place for families for share experiences, as well as providing news and information. Knowing that someone has gone through a similar situation to your own can be tremendously supportive and comforting.
Patau's and Edwards' syndromes
Patau's syndrome (Trisomy 13) affects 1 in 4,000 births with equal numbers of boys and girls affected. Edwards' syndrome (Trisomy 18) affects 1 in 3,000 births with three times as many girls affected. These syndromes are as common as cystic fibrosis and more frequent than muscular dystrophy or neurofibromatosis, yet very few people have ever heard of Trisomy 13 or 18. Patau's syndrome and Edwards' syndrome are the most common chromosome disorders after Down's syndrome (Trisomy 21).
On average 400 babies a year are born with Trisomy 13 and 18 with many cases diagnosed late in pregnancy. SOFT gives pre-natal support and care. What is right for one family may not be right for another, but the SOFT Booklets can help parents make informed choices, knowing they can be supported throughout their decisions. Babies born with full Trisomy 13 or 18 may not survive pregnancy or may have short lives and need specialised care. SOFT provides support and advice for families with surviving children as well as those sadly experiencing the loss of a child.