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Not knowing she had Edwards until after her birth, Julie and Murphy Babatunde's baby girl Damilola sadly passed away peacefully at home, 3 months old. Since then Damilola has inspired them to raise funds for Soft UK through creating beautiful bracelets and charms.
All items can be customized in whatever colour or charms, items available are mobile phone charms, handbag charms and bracelets.Julie's group on facebook, where more of these charms & bracelets can be seen is:
On Sunday May 12th Glen Cockman will be facing one of his toughest challenges. Getting up on a Sunday morning to get to Southwark Park for 9 O'Clock.
If he can overcome that then he faces the bigger challenge of cycling 55 miles across London and traversing every bridge between Tower Hill to Hampton Court. As well as this his route will take in several famous landmarks and parks.
Glen is looking to raise money for SOFT a charity that is very close to his heart. Please follow the link to Glen's 'Just Giving' page http://uk.virginmoneygiving.com/GlenCockman1
Adam Ingall and Chris Hammond will be doing the three peaks challenge and hoping to complete it within 24 hours on 22nd and 23rd June to raise money for Soft Uk.
Jonathan Clark will be putting himself through a huge amount of pain and agony to run the Paris marathon on the 7th of April. Running a marathon is a personal goal he's always hoped to achieve and I intends to run/walk/hobble/crawl accross that finish line no matter what on the day.
"I thought it be a great idea to raise some money for a charity to help give me that little extra boost of motivation on the day. All types of support would be appreciated whether it be money donations, words of encouragement or post marathon physiotherapy". http://uk.virginmoneygiving.com/Jonathan.Clark5
On Tuesday 12th March Robert Turnbull will have had his head and beard shaved. All money raised will be divided between two charities:
SOFT UK and Montfield Support Services Hansel Fund: helping fund activities and outings for clients using the service.
Any donation would be much appreciated by Robertand the two charities.http://uk.virginmoneygiving.com/RobertTurnbull
InsuranceWith, supported by Genetic Alliance UK, have launched the Who Cares Award to give carers the opportunity to be recognised for all of their hard work. The awards will be based on nominations from the public or through dedicated charities of those people who support others, dedicate their lives or put their lives on hold to care for others. Candidates can be young or old, a professional nurse or a relative. You can nominate someone you know here.
The Northern Ireland Family Day will take place on Saturday 10th August at the Charelmount Arms Hotel in Armagh.
Join other SOFT UK families to chat, share experiences and bring the children along for the fun activities! There will also be some remembrance time for those families who wish to remember a loved one.
As always everyone is very welcome!
Refreshments will be provided.
For more information and booking, please contact email@example.com
Joanne Fullerton, a Trainee Clinical Psychologist with Bangor University is completing a study investigating the experiences of siblings of children with life limiting conditions. She is looking for volunteers to take part. The aim of the study is to better understand the experiences of this group of siblings. If you are the parent of a sibling aged between 3 and 16 years, and you and your sibling child wish to take part, simply email her on firstname.lastname@example.org or contact her via telephone on 07957 620608
Our colleagues at SOFT USA have just launched their new website. It has a fantastic new look at contains lots of resources for families and also professionals. There is a comprehensive research section, providing all the details of the latest research on Trisomies and related issues. There are some beautiful family stories and videos and links to all their support materials. The site also has a foreign language translation function for those who first language is not english.
SOFT US have worked in partnership with us for many years and have kindly given us permission to feature their content on our own site, making sure that all families have access to the information that they need.
So head on over and have a look at www.trisomy.org
The CEN have published their results on their work improving support for families in Scotland of children who are tube fed. The full report is available here. http://www.cen.scot.nhs.uk/files/Emotional_Impact_Evaluation_Jan13.pdf