Emily is 7 years old. She was born with a rare chromosome disorder called 1p36 deletion syndrome. As a result of this, she has complex needs. These include low muscle tone (hypotonia), bilateral hearing loss, a heart condition called cardiomyopathy, and severe learning difficulties. She is non-verbal and communicates through signing Makaton, and a communication aid (computer).

When Emily was diagnosed at 8 months old, we were told by that the doctors that they just didn’t know whether Emily would walk or not, as her condition is so rare. We have always hoped she would, and have spent many hours working on building her core strength. Recently, we have noticed how much stronger and controlled Emily is becoming, and she can now walk with us holding her hands, albeit rather unsteadily!

We have heard many great things about a centre in Oxford called Footsteps. It is a privately run centre that uses physiotherapy techniques from abroad to help children up to 18 years with a variety of conditions. Some other children with 1p36 deletion syndrome have been, and their parents have been amazed by the positive results. It costs £1700 to send someone for 3 weeks of physio – 2 hours a day. One hour on the mat, and the other hour in something called the ‘spider’ which consists of stretchy ropes that are attached to the child to help build strength and balance.

In May we took Emily there for an 'assessment' session. We have felt, and the specialists at Footsteps agree, that because Emily is so close to walking independently, a 3 week course at the centre would really help boost her ability to walk, and her general independence.

This crowdfunding page is just one of the ways in which we are hoping to raise the money. Many kind friends and family members are offering to organise events on our behalf (quiz night, car boot sale, plant sale, half marathon, forest school day...) and we really are so grateful and overwhelmed by the enthusiasm shown by everyone to help Em on her journey.

We are hoping to send Emily in July as they have space available, depending on timings. We will keep everyone updated here to let you know how she gets on!

lots of love, and many thanks,

Dan, Mels, Emily and Tom xxxx