Ty Hafan Tiaras and Pyjamas themed Midnight Sleep Walk Friday 4th May Starting at Cardiffs Millennium Stadium
Ty Hafan has chosen to launch its “Tiaras and Pyjamas” themed Midnight Sleep Walk this year to coincide with the start of the Diamond Jubilee celebrations which will be taking place all over the country between now and June to celebrate the Queen’s sixty years on the throne.
The popular glittering fundraising event for ladies and girls is now in it’s fourth year and will take place on Friday 4 May starting once again from the Millennium Stadium at midnight.
“As well as changing the theme for this year we have shortened the route” explained event organiser Claire Power “which I am sure will encourage a lot more participants.
It is destined to be a really great night with the ladies wearing flashing tiaras and glow jewellery to bling up their pyjamas”
The route starting with a pitch side lap of the Millennium Stadium will take walkers into Cardiff City Centre and down towards Cardiff Bay before returning to the stadium; a total of six miles.
It’s only £10 to register but if you take along four friends, the five of you will get a discount of £20 on your total group registration fee. This means your group will only pay £30.
Registration is now open at www.midnightsleepwalk.co.uk or you can ring the events team on 029 2067 2065 to secure your place.
Husbands, boyfriends and dads need not be excluded as male marshals will be needed along the route. Register as a marshal on the dedicated Midnight Sleep Walk website or email the events team firstname.lastname@example.org
Blisse has neuronal migration disorder and peri-heteropia
As in previous years the Midnight Sleep Walk is an opportunity for ladies and girls to show their support for the mums and dads of life-limited children and young people, who rarely manage to get a full night’s sleep because of the need to provide 24/7 care.
Laura and Ashley Mellens try to make every hour of every day count for their two year old daughter Blisse. To support them in providing that care the family, including their other daughter eight year-old Nevaeh, were referred to Ty Hafan in July 2010.
Blisse has neuronal migration disorder and peri-heteropia, a very complex medical condition which is compounded by a severe form of epilepsy. She suffers many seizures, which can sometimes last up to 50 minutes. Sadly all this means that Blisse has a short life expectancy.
Like all young children who suffer seizures, Blisse is attached to a “sats” monitor at night time to keep a check on her oxygen and heart rate levels. Any change and an alarm will sound.
Because Blisse sleeps in the same room as her mum and dad, Laura and Ashley have developed an almost sixth sense and are often awake before the monitor goes off. They are constantly on alert for any changes in her breathing which can also indicate an impending seizure.
A proper full night’s sleep? That’s something they have long forgotten.
- Ty Hafan is the only children’s hospice in South Wales but its services are available throughout Wales and are free to any family that needs them.
- Life-limited means that the child or young person is not expected to live beyond 19 years old. We do not use the words “terminal”, “sick” or “ill”.
- Ty Hafan provides specialist palliative care addressing the physical, emotional, social and spiritual needs of each member of the family.
- The majority of Ty Hafan’s work is about “quality of life” rather than “end of life”. It is focused on “making the most of short and precious lives.”
- Ty Hafan provides care for the whole family – from diagnosis we journey with them and are there for as long as they need us. Ty Hafan never stops caring for the bereaved.
- Ty Hafan is not a hospital and is very different from an adult hospice. A child and his/her family can be referred at the time of diagnosis with care and support being provided throughout the course of the child’s condition which can be for many years.
- We provide support to the whole family almost anywhere, whether it is at the hospice, their own home or in hospital.
- The children and young people who access Ty Hafan’s services suffer from a broad range of conditions, including rare genetic disorders, congenital abnormalities, progressive neurological conditions or even clusters of symptoms as yet undiagnosed. For example, it cares for children with irreversible organ failure; Cystic Fibrosis, Duchenne Muscular Dystrophy, Battens Disease, Mucopolysoccaridosis, severe Cerebral Palsy and children with multiple disabilities.
- Apart from short break care, Ty Hafan provides services such as Family Support, Complementary Therapy, Music Therapy and Outreach Play both within the hospice and in the family home.
- Ty Hafan is not part of the health service and in 2010-11 received just 14% statutory funding towards more than £3million needed to provide care and support to life-limited families in Wales.
- The rest of Ty Hafan’s income is generated by public donations and fundraising – including community and corporate events, legacies – and its commercial activities such as its lottery and shops.