OUR FUNDRAISING EFFORTS IN MEMORY OF BABY LEO HAVE NOW TRANSFERRED TO: 

https://www.justgiving.com/fundraising/sma-uk-leo-smith

You can read Leo's story and see details of previous donations and events below. Your interest and support is much appreciated by Leo's family, friends, and SMA Support UK.

Firstly, a huge THANK YOU to so many people for their amazing generosity and efforts since Leo died at the end of September 2009. After reaching our initial fundraising target of £5,000 in February 2010 during a period equivalent to the length of Leo's short life, we passed our next target of "£10k by the 10k" (see below) on what would have been Leo's first birthday on 5th May 2010 and before the year was out reached our next target of £20,000. However, we plan to continue fundraising in memory of Leo on an ongoing basis, so please give generously.

Events & donations

* Friend Gina Hopkinson and Leo's Nan Vera asked for donations in lieu of presents for their 40th and 70th birthdays respectively, with donations following their parties held on 8th and 22nd October 2011 totalling over £600 made here or via https://angel-funds.everydayhero.com/uk/leo-smith.

* Friend Susie Winters once again ran the Bristol 10k in aid of the Jennifer Trust on 15th May 2011, shortly after what would have been Leo's 2nd birthday. Beating her time from last year to take her under the hour, Susie raised £325 via this site.

* We asked for donations in lieu of presents following the safe arrival of our little miracle daughter and new baby sister for Luke - Lottie born 8th April 2011, weighing 8lb 14oz. We never imagined or planned for another baby following our loss of Leo, but thankfully Lottie is only a carrier for the SMA gene that led to Leo's condition and we cannot believe the happiness she has brought us after the rollercoaster of emotions we have felt over the last 2 years. People's huge generosity has resulted in ~£530 being donated online, plus a further £110 in off-line donations.

* Leo's Daddy (Rich), and friend Sarah Henman, whose son Oliver was born a month after Leo, finally completed the Norwich half marathon on Sunday 13th March (postponed from 28th November 2010 due to snow). It was a first half marathon for them both and due to having to keep their training up for several additional months over the winter both ran with slight injuries but did Leo proud! Thanks to all who sponsored them - in addition to over £750 in sponsorship via this site, £250 was donated offline, and a further £300 via Sarah's own site (www.justgiving.com/Sarah-Henman), totalling £550 in offline donations.

* Friends Lynn and Graham donated a hugely generous £500 (recorded under offline donations) to commemorate the anniversary of Leo's funeral on 9th October and in recognition of the start of their new married life together at the end of October 2010. It is a comfort that Leo's little life had impacts in ways we could never have imagined. Very best wishes to Lynn and Graham in their future ventures!

* Over 30 family members and friends, including 13 children aged 8 months to 15 years, walked, ran or were pushed 5km for the Norwich Big Fun Run around Whitlingham Broad (www.bigfunrun.com) on Sunday 22nd August 2010. This is estimated to have raised over £600 via this site and nearly £700 in offline donations (total £1300). You can see photos at: https://www.facebook.com/media/set/?set=a.151453071548335.28414.100000509288262&type=1&l=32aae5afac.  One of Leo's last outings was to Whitlingham, where the above photo of him in his sunhat was taken the weekend before he died, so this seemed a fitting event to continue fundraising in his memory. Participants were:

- Leo’s mummy (Jane), Daddy (Rich) and brother Luke (aged 4)

- Leo’s Nan (Vera) and Pops (David)

- Sam Cane (aged 15) and Jo Edwards.

- Louise Reed with Joanne (aged 11) and Isobel (aged 9)

- Monica and Matt Rivers-Latham with Eleanor (aged nearly 2)

- Garry Barton and Tracey Sach with Timothy (aged 20 months)

- Amy Nicol and Andrew Smooker with Alex (aged 8 months)

- Sarah and Craig Endicott with Grace (aged 4) and Summer (aged 2)

 - Sarah Henman with Harry (aged 4) and Oliver (aged 1)

 - Lou and James Simmonds with Ella (aged 4) and Freya (aged 2)

 - Marie and Karl Thurston with Flo (aged 4) and Livvy (aged 2)

* Jill Lamb organised a Phoenix card party on 30th June 2010 and 10% of the sales from this were donated to the Jennifer Trust (£40 in offline donations).

* The Clarke-Coast family, including Iain (aged 13), Ned (aged 11) and Alfie (aged 8), completed a sponsored climb of Snowdon on Sunday 30th May 2010. This raised nearly £900, including £400 in offline donations. 

* UEA nursery, attended by Leo's big brother Luke, donated the 25% of sponsorship they were able to keep from their participation in the Barnado's Big Toddle to the Jennifer Trust. This amounted to £174 (recorded under offline donations).

* 39 family members and friends completed the Bristol 10 km race on Sunday 9th May 2010 to commemorate what would have been Leo's first birthday on 5th May. This is estimated to have raised over £8,000 via this site and nearly £3,000 in offline sponsorship. You can see pictures at: https://www.facebook.com/media/set/?set=a.123033281056981.20144.100000509288262&type=1&l=595a5c3248>https://www.facebook.com/media/set/?set=a.123033281056981.20144.100000509288262&type=1&l=595a5c3248.  Members of "Team Leo", ranging in age from 18 to 63 years and in abilities from sub-35 mins for a 10k to having barely run before were:

- Leo's Mummy (Jane Smith), Daddy (Richard Smith), Grampy (Rob Powell), Uncle (Alan Powell), and Auntie (Eleanor Badcock).

- Other family members Dave, Ann and Tom Fitzjohn, Martin Powell, and Ian Withers.

- Norwich-based friends Andy Hart, Gina & Steve Hopkinson, Andy Jones & Marianne Defernez.

- Other friends Phil Brown, Paul Chambers, Tim Davis, Rachel Dixon, Kerry Gilliland, Mike Hanks, Ali & Jon Hill, Sarah Patch, Andrew Shrubsole, Richard Stephenson and Susie Winters.

- Staff from the London School of Hygiene & Tropical Medicine where Leo's Daddy works: Arnab Acharya, Rachel Irwin, Cathal Logue, Melisa Martinez-Alvarez, Fern Terris-Prestholt, and Peter Vickerman.

- Friend Richard Senior and his team at Barton Willmore: Avril Chadwick, Tracy Ford, Ben Metcalfe, Matthew Rutty, and Georgina Tibbs who raised a total of £710 in offline donations (including via http://www.justgiving.com/Richard-Senior).

Press articles on the run include:

Bristol Evening Post http://www.thisisbristol.co.uk/news/10k-RUNNERS-CHARITY/article-2135735-detail/article.html and http://www.thisisbristol.co.uk/news/Mum-run-memory-little-Leo/article-2054123-detail/article.html

Eastern Daily Press http://tinyurl.com/3xqrjod and Norwich Evening News: http://www.eveningnews24.co.uk/content/eveningnews24/norwich-news/story.aspx?brand=ENOnline&category=News&tBrand=ENOnline&tCategory=xNews&itemid=NOED04%20May%202010%2013%3A06%3A44%3A227

* The Bristol office of Bevan Brittan LLP, where friend Susie Winters works, donated the proceeds of their monthly 'dress down' day to the Jennifer Trust in April 2010 - employees were able to dress casually on the last Friday of the month, provided they gave a contribution. This raised £140 (recorded under offline donations).

* Friend Nicola Brierley organised a fundraising coffee morning and as-new sale at her house in memory of Leo on Monday 26th April 2010, which raised £175 (recorded under offline donations).

* Friend Ed Rimmer completed the Dronfield 10k in Derbyshire on Sunday 21st March 2010 and raised £240 in sponsorship via this site.

* Leo's Great Auntie Margaret Davies organised a fundraising skittles evening and raffle for family in Bristol on Saturday 30th January 2010 which raised a fantastic £275 (recorded under offline donations). See photos at: https://www.facebook.com/janerebsmith/media_set?set=a.105719572788352.12139.100000509288262&type=3

*  A Christmas Quiz organised by Rita Powell at Broseley Methodist Church raised £43 which was paid to the Jennifer Trust via this site.

* Richard Blackwell, son of neighbours Mike and Carole, completed a 5km swim in less than 90 minutes (taking 86 mins) on 30th November 2009. This raised over £500 in sponsorship via this site plus £90 in offline donations.

* Friends Karina Fish and Cathryn Wood completed the Norwich half marathon on 29th November 2009 and raised over £700 (included here under offline donations) via thier own justgiving sites: http://www.justgiving.com/karina-fish and http://www.justgiving.com/cathryn-wood, where you can read their running stories and why they chose to raise money for the Jennifer Trust in memory of Leo.

* Friend Gina Hopkinson fundraised via a coffee morning and raffle at her house on Friday 30th October 2009. Excluding online donations this raised £325, half of which was sent to the Jenny Lind Children's Department at the Norfolk & Norwich hospital where Leo was treated and half to the Jennifer Trust (£160 under offline donations).

* We asked for donations at the time of Leo's funeral, held on 9th October 2009. The generosity of many family and friends meant that excluding online donations, nearly £500 was sent to the Jenny Lind Children's Department, and a further £465 was sent directly to the Jennifer Trust. Staff at the London School of Hygiene & Tropical Medicine where Leo's daddy works donated an additional £430, and we are aware of over £300 being given direct to the Jennifer Trust in memory of Leo (accounting for £1200 in offline donations).

Again a massive THANK YOU to all who have donated and helped with fundraising in various ways. In recognition of the significant contribution that the inital £5,000 raised made towards the Jennifer Trust’s work, the Jennifer Trust arranged for a star to be associated with Leo’s name (see http://www.starlistings.co.uk, star name: Leo Isaac Smith). We chose for this star to be in the constellation of ‘Leo Minor’ (lion cub). As a symbolic gesture it is a comfort to all who knew Leo and a fitting tribute to such a special little boy who touched the lives of so many people. We pray that Leo's impact will continue to be felt as we carry on fundraising in his name.

Leo's story as written by his mummy

Our dear baby Leo, a little brother for Luke, was born on 5th May 2009 and died aged nearly 5 months on 27th September 2009. At 3 weeks old a health visitor was concerned there might be a problem with Leo, by 8 weeks old we suspected that he had a condition called Spinal Muscular Atrophy (SMA) and at 12 weeks old the devastating diagnosis was confirmed. Leo had the severest form of SMA (Type I) which, due to its effects on motor nerves, causes muscle wasting and weakness and meant that Leo always had limited movement of his limbs, was never able to lift his head and increasingly struggled to feed and breathe. In all other ways we tried to make sure that Leo had at least as good a quality of life as any other baby his age and we and others enjoyed many happy times with him during the 145 largely sunny days of summer that he was with us (see https://www.facebook.com/media/set/?set=a.102220906471552.5477.100000509288262&type=1&l=7887204687). As the photos above show, Leo remained a bright and smiley boy right up until he died, passing away peacefully in our arms during our first emergency visit to hospital with him. A poem written by his mummy that was read at his funeral to celebrate his short but much treasured life can be seen at: http://www.jtsma.org.uk/poem_for_leo.html

Why support the Jennifer Trust?

Leo's death has had a huge impact on our wider family with the recent realisation that Leo's great auntie Jillian also died from SMA (Type 2) at the age of 12 in 1969. Although around 1 in 40 people, most unknowingly, carry the faulty gene that causes SMA, 40 years on SMA remains the most common genetic condition causing death in babies and young children and is a little known cause of severe disability in older children and adults. In many ways we were fortunate in our journey with Leo in that we knew early on there might be a problem, we got a prompt diagnosis, felt well-informed about Leo's condition and prognosis, received good care from local health professionals during Leo's life and death and have felt hugely supported by family, friends and our local community. However, we would not wish the sadness we have experienced in losing a much loved son, brother, grandson and nephew to SMA on anyone. Unfortunately, many families affected by SMA also experience months or years of uncertainty, trips to hospital, medical procedures and suffering and need longer-term emotional and practical support. With this in mind we are raising money on an ongoing basis for the Jennifer Trust (www.jtsma.org.uk), who have set up an "Angel Fund" in memory of baby Leo, to support their work. The Jennifer Trust aim to provide "help for today and hope for tomorrow" for those affected by SMA via a range of support services and funding for research into the condition. For example, the Jennifer Trust sent information at the time of Leo's diagnosis, their website served as a great source of comfort by illustrating that our experiences were shared by so many other families, and Leo (and his big brother!) gained much pleasure from a toy pack loaned by the Jennifer Trust containing fibre-optic lights, projectors, musical toys, CDs and sensory objects.

Updated 6/10/11