Jade's story

Monday 14 February 2011

Tŷ Hafan has been providing comfort, care and support since 1999 to life-limited children, young people and their families across Wales. Life-limited means the children and young people are not expected to live beyond the age of 19.

Almost 20% of those 400 families have come from the South East Wales area and sadly over a third of them have already experienced the heart-breaking loss of their child.  Tŷ Hafan has provided support for them along a journey that thankfully few of us have to take and in many cases continues that support for as long as it is needed.  

Over the last 12 years Tŷ Hafan has been developing its services to meet the needs of families within their own homes, as well as providing short break stays at the hospice in the Vale of Glamorgan.

Fourteen year old Jade lives with her mum, dad and two brothers near Chepstow.
 
Because of her complex disabilities she would find the journey to the hospice a little challenging, so instead Tŷ Hafan, or rather members of its staff, travel to her.

Jade was born very prematurely and as a result suffered from many problems including seizures, respiratory and feeding problems which meant numerous admissions to hospital in her early years.

She was diagnosed with cerebral palsy and epilepsy, has little movement in all four of her limbs and cannot communicate verbally.  She is also registered blind.

Kirsty Clark is one of the Outreach Play Practitioners at Tŷ Hafan who has worked with Jade on a regular basis in the past. Kirsty and her colleague Jane Creed provide play sessions at home on an individual basis with the aim of helping children, who in some cases are severely disabled, reach their full potential through the medium of play.

Jade’s mum Angie would often join in with the sessions in order to continue with them in between Kirsty’s visits.

“It’s wonderful to see Jade really enjoy her time with Kirsty. She is able to bring things out from the Tŷ Hafan Toy and Leisure Library which under normal circumstances Jade would not be able to access.”

Jade has recently been very poorly and Kirsty has arranged to visit her at home to re-new the play sessions and help her to regain the skills she achieved before she became ill.   She will also be having treatment from Tŷ Hafan’s resident complementary therapist Angela Tucker who will also travel to the family home.

Complementary therapy is a growing area within Tŷ Hafan’s service provision to the children and families. Aromatherapy and relaxation treatments such as reflexology and Indian head massage can control the pain and physical discomfort often experienced by the children and young people. These services are extended to other family members to alleviate the stress and worry of looking after a very sick child 24/7.

This service is sometimes offered to parents staying in hospital with their children for long periods of time and experiencing high levels of stress. Of course, the complementary therapies are also available to the child in this situation if appropriate.

Music can also play an important part in alleviating any stress and frustration a child with complex needs may be experiencing. Diane Wilkinson is a trained music therapist who attends the hospice twice a week.  She also goes out to families in their own home to help the children make music in any way they can.  By using the latest technology, children and young people who are very limited in their movements are able to make music with the faintest flutter of an eye lid.

All this comes as at a cost of course.  Without any statutory Government funding, Tŷ Hafan relies upon the generosity of the general public and organisations of Wales to provide its services free of charge to the hundreds of families and their children across Wales.

An easy way for you to help children like Jade and her family is to become a member of Crackerjackpot, the Tŷ Hafan lottery which has 81 guaranteed weekly prizes, a £2,000 top prize and a potential rollover jackpot of £12,000,

For just £1 a week you will make a real difference to their lives, giving life-limited children, young people and their families the comfort, care and support they need.

To find out more about the Tŷ Hafan Crackerjackpot and how to join contact 029 2067 2062 or visit www.tyhafan.org.