Jacob’s Sensory Garden

Hi, we are fundraising on behalf of James and Samantha Tully. I am putting together this go fund me page to help a very ill little boy who all he wants when he comes out of hospital is his own little garden. Jacob was diagnosed with Angelman syndrome which severely affects his physical and learning capabilities. Jacob was diagnosed with Angelman syndrome very late in life. he is currently 8 yeard of age and unfortunately he will be spending the rest of his life in a wheelchair. Jacob has currently spent the majority of this year in a hospital bed with his parents taking it in turns to be by his side as they also have other children at home, So the idea of this Go Fund Me page is to help with costs to renovate the family’s garden so that it can be wheel chair friendly with sensory areas and also a hot tub with a specialist hoist to help him get in. This is a massive ask to help raise money for this cause but it will be very rewarding to see his little face light up when he sees his newly renovated garden.

to give you more idea on Angelman syndrome please have a read below.

A child with Angelman syndrome will begin to show signs of delayed development at around 6 to 12 months of age, such as being unable to sit unsupported or make babbling noises.

Later, they may not speak at all or may only be able to say a few words. However, most children with Angelman syndrome will be able to communicate using gestures, signs or other systems.

The movement of a child with Angelman syndrome will also be affected. They may have difficulty walking because of issues with balance and co-ordination (ataxia). Their arms may tremble or make jerky movements, and their legs may be stiff.

Several distinctive behaviours are associated with Angelman syndrome, although a child with the condition may not have all of these behaviours. They include:

frequent laughter and smiling, often with little stimulus

being easily excitable, often flapping the hands

being restless (hyperactive)

having a short attention span

trouble sleeping and needing less sleep than other children

a particular fascination with water

By around 2 years of age, a small head which may also be flat at the back (microbrachycephaly) may be noticeable in some children with Angelman syndrome. Children with Angelman syndrome may also start to have seizures or fits around this age.

Other possible features of the syndrome include:

tendency to stick the tongue out

crossed eyes (strabismus)

skin, hair and eyes that are paler than other family members

a wide mouth with widely spaced teeth

a side-to-side curvature of the spine (scoliosis)

walking with arms in the air

Some young babies with Angelman syndrome may have difficulties feeding because they're unable to co-ordinate sucking and swallowing. In such cases, they may need to be fed through a feeding tube. Babies with Angelman syndrome may need to be treated for reflux.

on behalf of the Family, we thank you so much for your help and support.

Chesney X