Update 3rd June 2011
This day two years ago was the best day of our lives, Saffron was born and our family complete. Today should be a happy day, it should be our daughters 2nd birthday. Instead we have watched the dvd's, looked at her pictures and talked about our little Saf Saf....it isn't enough. Saf we miss you so much.
Update 18th October 2010
We would like to say thank you to Emma Jane Forrester, who ran the London Marathon this year and raised a fantastic amount of money for Saffy's angel fund and the JT. We also want to say a huge thank you to the Lairy Hikers who have raised £1000 climbing mount Snowdon this summer. Please do not stop all your fundraising efforts for the Jennifer Trust to help all those affected by SMA. Whatever we do we cannot bring our Saf baby back but we can help others cope with and/or maybe one day, overcome this awful syndrome. Here's a quick reminder of the facts about SMA and the wonderful things the Jennifer Trust does with the money you raise/donate.
Spinal muscular atrophy (SMA) is a condition that affects the nerves in an area of the spinal cord called the anterior horn. These nerve cells become damaged, breaking the link between the brain and the muscles. As a result, the muscles can't be used and become wasted or atrophied.
Adult Onset SMA
Number of forms differing in age of onset. Degree of weakness is variable.
The Jennifer Trust provides 'Help for Today & Hope for Tomorrow' through a range of support services and the funding and promotion of research.
Update 3rd June 2010
Happy Birthday Saffy - what a fitting day to update your page. On your special day we think of you more than ever, our hearts break more than ever and our pain is deeper than ever. Most of all we long for you, our beautiful daughter and sister. We miss you Saf and pray that you are at peace. We know we will see you again.
Thanks so much to all you, who have been fundraising and donating in Saffy's name. Firstly to the Lairy Hikers, Tracy, Matt and Tracy, who made it up and down Snowdon in terrible weather conditions last Saturday. We are so proud of you. Brilliant, fabulous friends forever. Thanks to all who sponsored them. We will announce shortly the total amount raised.
Also a big thank you to Dee Yarnall from Warburtons and everyone who sponsored her, who ran the Birmingham half marathon and donated £50 to Saffy's Angel Fund. Support and fundraising from the staff of Warburtons, where Saffy's grandad works has been amazing. Thank you all.
Thank you so much to everyone for honouring Saffron in this way by donating on her special days and thanks for all of your cash generously given to the Jennifer Trust to help those families in the UK affected by SMA. Please keep fundraising and donating to this fantastic cause, as the Jennifer Trust is the only point of information and support for families like ours. To encourage us and you along the way we have upped our target to £7500. We love you all very much.
Update 27 January 2010
Today is exactly 3 months since Saffron passed away. In some ways it feels like an eternity and in other ways, like it was only yesterday. For our family, the thing that has been consistent through the last 3 months is, all of you who support us through messages of love and all of your generous donations and fundraising for the Jennifer Trust in Saffron's name. For this we are truly grateful and thank you from the bottom of our hearts.
The latest offline donation was a massive £2785 raised by the Warbies Wheelers, a team of budding cyclists, who all work for Warburtons. They, very generously, cycled from London to Paris. Inspired by Saffron's story they kindly donated this huge amount to the Jennifer Trust. We would like to thank Martin Garlick, Amy, Paul H, Paul P, David, Peter, Richard, Mark and Colin for taking the time and effort to do such a wonderful challenge for Saffy and the Jennifer Trust and we would also like to thank everyone at Warburtons who, most generously, sponsored them.
In terms of fundraising throughout the year, there will be several events and challenges taking place, all inspired by Saf. The first has been organised already by our very close friends, Tracy Martin, Matthew Barr and Tracy Barr. They will be climbing Mount Snowdon on 29th May. If you would like to sponsor them for Saffron and the Jennifer Trust their justgiving page is www.justgiving.com/lairyhikers Here you can read their story, make donations and give them messages of support and advice. Thank you for giving your time to remember Saf and support the Jennifer Trust to them and all who sponsor them.
Alex, Daisy and I will be calling on our friends in France through different events, to support us in raising money for the Lenval Foundation. The Lenval Foundation is the hospital that cared for Saffron and as a result of their sound expertise and advice, Saffron was able to enjoy her life to the full. We feel that some fundraising for the hospital would be a fitting thank you. These events are still being finalised so I will give full details on the next update.
To wrap up this time, we would just like to emphasise to all of you, who are doing and all of you who are donating, that this means the world to us, for Saffron's memory and for the Jennifer Trust. You are all marvellous people. Thank you.
Update 24 November 2009
At this point we want to say thank you to everyone, who has donated to the Jennifer Trust through Saffron's name and for all the love and support that you have given us through this journey. On Sunday 22nd November, we gave thanks for Saf's life at Market Harborough Baptist Church, which was wonderfully led by Rev. Nick Cook. A real tribute to our beautiful baby.
We will also be continuing to support the Jennifer Trust through fundraising events (which we will reveal in the new year) and making donations to honour the important dates in the life of Saffron. Throughout Saffron's life, we used the Jennifer Trust website for information and support although we live in France and Saffron's health was followed by french healthcare professionals. For us, we need to keep fundraising to help those other families in UK and abroad, who need guidance, information and help in English. We also need to fund the research so we can find a cure.
It may seem like the closure of this particular chapter, however as a family we will be honouring Saf continually through the rest of our lives in thoughts, prayers and love.
Introducing Saffron Rose...
Saffron was born on 3rd June 2009 and was diagnosed with SMA type 1 on 13th July 2009. She passed away peacefully on 27th October 2009.
She was cared for here by us at home and the Lenval childrens hospital in Nice, France. The doctors, nurses, medical equipment providers and associated physio's were fantastic and we know her life was made as comfortable as possible for her to enjoy.
Saffron was such a precious gift for us, her parents and a special sister to Daisy. Saf touched everybody she met with her beautiful smile and her gorgeous eyes. Her short life here in the south of France was packed full of visits to the beach, walks around town, playing and entertaining family and friends who came to see her from the UK.
She was such a brave little girl right until the end through all of the stages of her illness, she was quite simply amazing.
Her memory will live with us forever, and it is only right we set up this page in honour of Saffron for the Jennifer Trust.
We will always love you Saffron Rose
Mummy, Daddy and Daisy
XXX
Thanks for taking the time to visit my JustGiving page.
Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity and make sure Gift Aid is reclaimed on every eligible donation by a UK taxpayer. So it’s the most efficient way to donate - I raise more, whilst saving time and cutting costs for the charity.
So please dig deep and donate now.
