Sami’s story

19-year-old Sami has Down Syndrome and lives with his Mum, Denise, in Halstead. Denise referred her family to The J’s in spring 2019 after Sami was diagnosed with a rare degenerative condition – Fahr Disease.  

Since Christmas Sami and his mum, Denise, have been instructed to shield at home as the guidance for adults with Down Syndrome was changed. During lockdown the family have been enjoying the virtual sessions Little Havens and The J’s have been running such as music therapy and cooking sessions.  

Denise said, “Without the virtual sessions The J’s and Little Havens have been providing for the young people we wouldn’t have anything to do throughout the day. 

“Every week at 11am Monday, Wednesday and Friday Sami knows he has music therapy over video call with the hospice and it gives him something to do. These sessions allow him to interact with other children and young people, and are a nice break in the day when during lockdown every day can become the same. I sit with Sami during the sessions but they also give me a little break and the chance to grab a cup of tea” 

“We’ve also been enjoying the baking classes over zoom with the hospice as it’s something different to break up the day we can do together. On the call Sami is able to see the other young people taking part so it provides him with that important social interaction. The great thing about the sessions are they aren’t too long for Sami, the staff keep him engaged for the whole session without getting restless.” 

“The sessions have been important for both of us, they have helped with feeling isolated and given us the opportunity to interact with others.” 

“Fundraising for The J’s and Little Havens is so important to help children and young people across Essex. I hope the people who fundraise for Havens Hospices get personal satisfaction out of it too because they are helping families like mine. 

“If we didn’t have these kind people donating and fundraising for the hospice I don’t know where these children and young people would turn, and how the families would cope.” 

To find out more about how you or someone you know would benefit from the care at Little Havens or The J’s, please click here.

If you would like to donate to Little Havens or The J’s please click here.

Published in 2021

Without the virtual activities provided by the hospice I think shielding would have been tough. The sessions have been important for both of us, they have helped with feeling isolated and given us the opportunity to interact with others.

Denise, Sami's Mum