Useful information websites & links
Our family is made up of the families and friends of children born with 1p36 deletion syndrome.
1p36 deletion is a rare chromosone disorder that occurs in approx 1 in 5000 - 10000 births.
It is unlikely that families will come in to contact with another child with 1p36 del in their local community. Our online community helps us to keep in touch with each other and share experiences.
Unique is a source of information and support to families and individuals affected by any rare chromosome disorder and to the professionals who work with them. The people from Unique are amazing and have been a priceless service to myself and my family in accepting Evie-Anne's medical condition, and helped put us in touch with other familys in the same situation.
Newlife gives practical support for disabled children throughout the UK, cares for the carers, funds medical research, gives grants for medical equipment thats the state do not provide, and creates awareness and campaigns for change.
The Family Fund helps families with severely disabled or seriously ill children and young people aged 17 and under to have choices and the opportunity to enjoy ordinary life.
They give grants for things that make life easier and more enjoyable for the disabled child, young person and their family, such as washing machines, equipment, driving lessons, computers and holidays.
They are not health care professionals. They are a group of parents who are raising infants and children with feeding tubes. They are Super Tubie Mommas and Daddies who want to share what we have learned along the way while raising awareness of tube feeding.
Because there is little awareness of tube feeding, it is often misunderstood. Tube feeding is a last resort for medically complicated children who are unable to eat or drink enough to live and thrive. They want to raise positive awareness of this life saving medical intervention.