Lily Bea 11 Days 11 Cities Rally
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The Project

Three members of Team Lily Bea, lead by Lily's father David, will be attempting a journey of epic proportions to raise money for the SMA Trust, and to raise awareness of SMA.
In just 11 days, they will be undertaking a grand, whistle-stop tour of Europe, travelling from London across the Continent to Prague and back via Brussels, Amsterdam, Cologne, Frankfurt, Munich, Vienna, Berlin, Hamburg and Rotterdam - a journey in excess of 1,500 miles.
The catch? They will be travelling in a very beaten up, 17 year old black London cab called Monica, incapable of travelling more than 55mph, with more fundamental technical issues than a chocolate teapot.
Along the way, in addition to keeping Monica running, the team will be undertaking a series of entertaining challenges (e.g. selling their custom made Team Lily Bea sausages in Frankfurt,creating and selling their own branded fragrance in Cologne, making a giant Viennese whirl in Vienna – you get the idea) which will test their teamwork, resourcefulness and inner resolve. They will also be meeting up with families affected by SMA to share experiences coping with this terrible condition across Europe.
They aim to raise as much money as possible for The SMA Trust through a mix of corporate sponsorship, crowd funding and private donations. Donations raised on this page will go towards funding a few essential repairs to the cab (which will be sold to raise more money for the SMA Trust on our return to the UK) and other necessary expenses of the trip with all remaining donations or profits will be sent to the SMA Trust.
Joining them on their adventure will be award winning young film maker, Jack Spring. Spring will be recording the Team's progress along every stage of their adventure, and will be using the footage to produce a 45 minute documentary that will be both funny and touching. The Team will use their film to help raise awareness of SMA and to assist the SMA Trust to lobby for increased funding for research into neuromuscular degenerative conditions.
The SMA Trust say:
''The SMA Trust is proud to support Team Lily-Bea’s 11 Cities in 11 Nights fundraising adventure. The SMA Trust is the only UK charity solely dedicated to funding research into a cure and treatments for SMA and currently funds over 75% of UK charity funded research. Despite being rare and a relatively unknown, in the UK, approximately 100 children are born with SMA each year. 1 in 40 of us is a carrier and when two SMA carriers have a child together, there is a 25 % chance that the child will develop SMA.
This rally will not only raise vital funds for The SMA Trust, but will also help raise awareness of SMA. We wish David and his companions the very best for their adventure! ''
Our Inspiration

Lily Beatrice Razzell was our second baby. She arrived late, just like her older brother, James, had three years earlier. We were so full of excitement just waiting for her to arrive. We knew she was a girl, and we had already chosen our names: Lily after my wife's Grandmother, Lilian, and Beatrice because we fell in love with the name. We fell head-over-heels in love with Lily Bea the moment she was born, on 19th of December 2011. She weighed a whopping 9lbs 15oz and had a head full of curly dark hair. She was born within two hours and we were back home about 4 hours later. All seemed to be well, and we were so excited to have received the best Christmas present in the world: a beautiful daughter to join our beautiful son.
Within a few weeks, we had a few concerns for Lily. She seemed not to move her arms and legs so much as she had, and we realised that when we picked her up her legs just hung down rather than bunching up in that lovely way that babies’ legs do. It was time for Lily’s check-up, so we thought we,would just mention these concerns to the Doctor. On examination, the Doctor agreed that Lily was rather lacking in muscle-tone. It was on hearing the Doctor say that, with tests, it is relatively easy to isolate the gene responsible, that alarm bells truly started ringing. We went home deflated and sickeningly worried about what might follow. I started doing some research on the internet, and that night actually had already worked out that Lily Bea probably had SMA. Although we had not noticed other symptoms until then, on reading the symptom list, we realised that Lily was experiencing quite a number of them: namely that her breathing was laboured, and her chest weak and shrunken.
After an appointment with a private Paediatrician, it became apparent that we needed to be seen by a specialist at Addenbrooke’s Hospital in Cambridge. We remain so deeply indebted to Dr Alastair Parker, a leading consultant in Paediatric Neurology at the hospital, for his subsequent care, both of Lily, and of us. I think he was a little shocked that we were there telling him what we thought was wrong with Lily Bea, rather than vice versa, but he agreed that it did look as though SMA was a possibility. He arranged various tests that very same day, and arranged a meeting for the following day with our GP, Health visitors and Community nurses. We were bowled over by the care plan they had in action for us.
When SMA – Type 1 was confirmed, we were told that Lily may live another 3-8 weeks. I cannot begin to explain what goes through a parent’s mind and heart at being told such a heart-breaking thing. I was now facing the agonising thought of having to go back to work and miss out on precious time with Lily Bea. Thankfully, my employers were hugely understanding, and over the following weeks and months, I worked very flexibly, wherever possible.
In spite of her limitations, Lily continued to amaze us all, healthcare professionals included. She developed a beautiful and cheeky personality, and was a happy, contented baby whose smile was ever present. James and Lily were never far from each other, and delighted in each other’s company. Mostly, we tried to remain strong and resolute: Lily wasn’t going to be with us long, so we weren't going to spend all her time here being sad. We couldn’t change the outcome, so had to enjoy our baby girl to the full. We did everything we could. We took Lily to the beach, we took her to the park, we took her on picnics and even took her up to Durham to spend Easter with family. We thoroughly enjoyed her.
In June, at the suggestion of our nurse, we celebrated Lily Bea’s half-birthday. We made a KitKat cake and had a little picnic at the park with special friends. Lily ate some of her cake, and seemed to love the chocolate. We enjoyed a gorgeous early summer together.
In August, however, we noticed that Lily Bea had taken a turn for the worst. Since SMA sufferers struggle to swallow, as their muscles are weakened, Lily was struggling to manage her own secretions. She was also struggling to feed. After a distressing weekend, we made the decision to have a feeding-tube inserted. We could now make sure that Lily was having the milk she needed, and it also meant that giving medication was much more straightforward. We began to give her a drug which reduced the amount of saliva she was producing. It was the best decision we made. She seemed happier again, and we had a little cheeky poppet back once more. James was now able to help look after her by feeding her. It was tough going out in public and being stared at, pitied and ignored by some, but I’m glad we didn’t shy away. We continued to take Lily to playgroups with her brother; we just fed her through the tube. But it wasn’t always easy, by any means.
Things went downhill rather quickly after that. We had been told that often chest infections prove to be fatal in the end. Because the chest muscles are so weak, SMA babies cannot cough effectively… When Lily got her first chest infection, we knew we were on borrowed time. Dr Parker advised that she have antibiotics, and they cleared the infection fairly fast. We realised that, although the medicine would work for now, we would surely now be in a cycle of infections… He admitted that, yes, this would probably be the case. We had several rounds of antibiotics, and we had, by this point, begun to administer small doses of morphine to ease any pain.
Three days before Lily died, my wife took Lily and James to a local park for James to have a play. It was a hot day, and my wife realised that Lily was fighting to breathe, more than ever. It was harrowing for her to watch. Later that night, at 11pm, Dr Parker came to our home to help. Lily was now truly suffering and this was something we had never wanted to happen, or to witness. We increased her dose of morphine and her breathing finally calmed. While stroking her gorgeous locks, Dr Parker informed us that we probably only had days, if not hours, with our girl. We stroked her, cuddled her (as best we could), and stayed with her.
Two days later, just as we woke ready to give Lily her morphine and her other medication, we noticed that the gap between her breaths was vast – a sign that the end was very near. We stroked her little back, and she breathed her last. It was as though she hung on for us to be able to do that. She died peacefully in bed with us, on 21 September 2012, aged 9 months and 2 days.
Lily remains an enormous sense of inspiration to us, and to many. Not a day goes by when we don’t think of her, speak about her, or imagine her playing with her brother. It is incredible the way in which some of the toughest times in life can become the biggest inspirations…
Since Lily’s death, Team Lily Bea have raised over £40,000 in her memory.

What is SMA?
Two people have a chance meeting while at a bar with some friends one night. They hit it off. They go on a first date. They fall deeply in love, get married and start a family. Neither of them knows they both carry the gene responsible for Spinal Muscular Atrophy (SMA), the leading genetic killer of young children.
With EVERY pregnancy, their children will have a 25% chance of being born with this brutal degenerative, terminal disease. They only learn about SMA after their child is diagnosed. There is no treatment. There is no cure.
This is SMA – a genetic neuromuscular disease, which affects nerves responsible for muscle function. It is the story for thousands of families around the world.
1 in EVERY 40 people, or nearly 175 million people globally UNKNOWINGLY carry the SMA gene.
1 in 40 people is:
- 1 person in every Starbucks
- 10 people on every jumbo jet
- 20 million people on Facebook
Most SMA carriers have NO family history of SMA and NO signs during pregnancy.
Although classified as rare, SMA is the leading genetic killer of infants and toddlers, with approximately 95% of the most severely diagnosed cases resulting in death by the age of 18 months. Children with a less severe form of SMA face the prospect of progressive muscle wasting, loss of mobility and motor function. If you and your partner are carriers of the SMA gene, every pregnancy – EVERY SINGLE PREGNANCY – has a 25% chance of producing a child with SMA.
The type of SMA that Lily had, SMA Type 1, is the most common form of SMA and the most severe. Symptoms are usually apparent at birth or during the first few months of life. SMA is degenerative, hindering the ability to walk, stand, eat, speak, breathe and swallow. SMA Type 1 babies have floppy limbs and develop serious respiratory problems. Most children with this type of SMA rarely survive their second birthday. SMA can happen to anyone. There is NO cure.
However, exciting research progress means the first drugs are now in clinical trials, with others in the pipeline. Specialists know what causes SMA and what they need to do to develop effective therapies. They are on the verge of major breakthroughs that will strengthen SMA affected children's bodies, extend life, and eventually lead to a cure.
Three members of Team Lily Bea, lead by Lily's father David, will be attempting a journey of epic proportions to raise money for the SMA Trust, and to raise awareness of SMA.
In just 11 days, they will be undertaking a grand, whistle-stop tour of Europe, travelling from London across the Continent to Prague and back via Brussels, Amsterdam, Cologne, Frankfurt, Munich, Vienna, Berlin, Hamburg and Rotterdam - a journey in excess of 1,500 miles.
The catch? They will be travelling in a very beaten up, 17 year old black London cab called Monica, incapable of travelling more than 55mph, with more fundamental technical issues than a chocolate teapot.
Along the way, in addition to keeping Monica running, the team will be undertaking a series of entertaining challenges (e.g. selling their custom made Team Lily Bea sausages in Frankfurt,creating and selling their own branded fragrance in Cologne, making a giant Viennese whirl in Vienna – you get the idea) which will test their teamwork, resourcefulness and inner resolve. They will also be meeting up with families affected by SMA to share experiences coping with this terrible condition across Europe.
They aim to raise as much money as possible for The SMA Trust through a mix of corporate sponsorship, crowd funding and private donations. Donations raised on this page will go towards funding a few essential repairs to the cab (which will be sold to raise more money for the SMA Trust on our return to the UK) and other necessary expenses of the trip with all remaining donations or profits will be sent to the SMA Trust.
Joining them on their adventure will be award winning young film maker, Jack Spring. Spring will be recording the Team's progress along every stage of their adventure, and will be using the footage to produce a 45 minute documentary that will be both funny and touching. The Team will use their film to help raise awareness of SMA and to assist the SMA Trust to lobby for increased funding for research into neuromuscular degenerative conditions.
The SMA Trust say:
''The SMA Trust is proud to support Team Lily-Bea’s 11 Cities in 11 Nights fundraising adventure. The SMA Trust is the only UK charity solely dedicated to funding research into a cure and treatments for SMA and currently funds over 75% of UK charity funded research. Despite being rare and a relatively unknown, in the UK, approximately 100 children are born with SMA each year. 1 in 40 of us is a carrier and when two SMA carriers have a child together, there is a 25 % chance that the child will develop SMA.
This rally will not only raise vital funds for The SMA Trust, but will also help raise awareness of SMA. We wish David and his companions the very best for their adventure! ''
Our Inspiration
Lily Beatrice Razzell was our second baby. She arrived late, just like her older brother, James, had three years earlier. We were so full of excitement just waiting for her to arrive. We knew she was a girl, and we had already chosen our names: Lily after my wife's Grandmother, Lilian, and Beatrice because we fell in love with the name. We fell head-over-heels in love with Lily Bea the moment she was born, on 19th of December 2011. She weighed a whopping 9lbs 15oz and had a head full of curly dark hair. She was born within two hours and we were back home about 4 hours later. All seemed to be well, and we were so excited to have received the best Christmas present in the world: a beautiful daughter to join our beautiful son.
Within a few weeks, we had a few concerns for Lily. She seemed not to move her arms and legs so much as she had, and we realised that when we picked her up her legs just hung down rather than bunching up in that lovely way that babies’ legs do. It was time for Lily’s check-up, so we thought we,would just mention these concerns to the Doctor. On examination, the Doctor agreed that Lily was rather lacking in muscle-tone. It was on hearing the Doctor say that, with tests, it is relatively easy to isolate the gene responsible, that alarm bells truly started ringing. We went home deflated and sickeningly worried about what might follow. I started doing some research on the internet, and that night actually had already worked out that Lily Bea probably had SMA. Although we had not noticed other symptoms until then, on reading the symptom list, we realised that Lily was experiencing quite a number of them: namely that her breathing was laboured, and her chest weak and shrunken.
After an appointment with a private Paediatrician, it became apparent that we needed to be seen by a specialist at Addenbrooke’s Hospital in Cambridge. We remain so deeply indebted to Dr Alastair Parker, a leading consultant in Paediatric Neurology at the hospital, for his subsequent care, both of Lily, and of us. I think he was a little shocked that we were there telling him what we thought was wrong with Lily Bea, rather than vice versa, but he agreed that it did look as though SMA was a possibility. He arranged various tests that very same day, and arranged a meeting for the following day with our GP, Health visitors and Community nurses. We were bowled over by the care plan they had in action for us.
When SMA – Type 1 was confirmed, we were told that Lily may live another 3-8 weeks. I cannot begin to explain what goes through a parent’s mind and heart at being told such a heart-breaking thing. I was now facing the agonising thought of having to go back to work and miss out on precious time with Lily Bea. Thankfully, my employers were hugely understanding, and over the following weeks and months, I worked very flexibly, wherever possible.
In spite of her limitations, Lily continued to amaze us all, healthcare professionals included. She developed a beautiful and cheeky personality, and was a happy, contented baby whose smile was ever present. James and Lily were never far from each other, and delighted in each other’s company. Mostly, we tried to remain strong and resolute: Lily wasn’t going to be with us long, so we weren't going to spend all her time here being sad. We couldn’t change the outcome, so had to enjoy our baby girl to the full. We did everything we could. We took Lily to the beach, we took her to the park, we took her on picnics and even took her up to Durham to spend Easter with family. We thoroughly enjoyed her.
In June, at the suggestion of our nurse, we celebrated Lily Bea’s half-birthday. We made a KitKat cake and had a little picnic at the park with special friends. Lily ate some of her cake, and seemed to love the chocolate. We enjoyed a gorgeous early summer together.
In August, however, we noticed that Lily Bea had taken a turn for the worst. Since SMA sufferers struggle to swallow, as their muscles are weakened, Lily was struggling to manage her own secretions. She was also struggling to feed. After a distressing weekend, we made the decision to have a feeding-tube inserted. We could now make sure that Lily was having the milk she needed, and it also meant that giving medication was much more straightforward. We began to give her a drug which reduced the amount of saliva she was producing. It was the best decision we made. She seemed happier again, and we had a little cheeky poppet back once more. James was now able to help look after her by feeding her. It was tough going out in public and being stared at, pitied and ignored by some, but I’m glad we didn’t shy away. We continued to take Lily to playgroups with her brother; we just fed her through the tube. But it wasn’t always easy, by any means.
Things went downhill rather quickly after that. We had been told that often chest infections prove to be fatal in the end. Because the chest muscles are so weak, SMA babies cannot cough effectively… When Lily got her first chest infection, we knew we were on borrowed time. Dr Parker advised that she have antibiotics, and they cleared the infection fairly fast. We realised that, although the medicine would work for now, we would surely now be in a cycle of infections… He admitted that, yes, this would probably be the case. We had several rounds of antibiotics, and we had, by this point, begun to administer small doses of morphine to ease any pain.
Three days before Lily died, my wife took Lily and James to a local park for James to have a play. It was a hot day, and my wife realised that Lily was fighting to breathe, more than ever. It was harrowing for her to watch. Later that night, at 11pm, Dr Parker came to our home to help. Lily was now truly suffering and this was something we had never wanted to happen, or to witness. We increased her dose of morphine and her breathing finally calmed. While stroking her gorgeous locks, Dr Parker informed us that we probably only had days, if not hours, with our girl. We stroked her, cuddled her (as best we could), and stayed with her.
Two days later, just as we woke ready to give Lily her morphine and her other medication, we noticed that the gap between her breaths was vast – a sign that the end was very near. We stroked her little back, and she breathed her last. It was as though she hung on for us to be able to do that. She died peacefully in bed with us, on 21 September 2012, aged 9 months and 2 days.
Lily remains an enormous sense of inspiration to us, and to many. Not a day goes by when we don’t think of her, speak about her, or imagine her playing with her brother. It is incredible the way in which some of the toughest times in life can become the biggest inspirations…
Since Lily’s death, Team Lily Bea have raised over £40,000 in her memory.
What is SMA?
Two people have a chance meeting while at a bar with some friends one night. They hit it off. They go on a first date. They fall deeply in love, get married and start a family. Neither of them knows they both carry the gene responsible for Spinal Muscular Atrophy (SMA), the leading genetic killer of young children.
With EVERY pregnancy, their children will have a 25% chance of being born with this brutal degenerative, terminal disease. They only learn about SMA after their child is diagnosed. There is no treatment. There is no cure.
This is SMA – a genetic neuromuscular disease, which affects nerves responsible for muscle function. It is the story for thousands of families around the world.
1 in EVERY 40 people, or nearly 175 million people globally UNKNOWINGLY carry the SMA gene.
1 in 40 people is:
- 1 person in every Starbucks
- 10 people on every jumbo jet
- 20 million people on Facebook
Most SMA carriers have NO family history of SMA and NO signs during pregnancy.
Although classified as rare, SMA is the leading genetic killer of infants and toddlers, with approximately 95% of the most severely diagnosed cases resulting in death by the age of 18 months. Children with a less severe form of SMA face the prospect of progressive muscle wasting, loss of mobility and motor function. If you and your partner are carriers of the SMA gene, every pregnancy – EVERY SINGLE PREGNANCY – has a 25% chance of producing a child with SMA.
The type of SMA that Lily had, SMA Type 1, is the most common form of SMA and the most severe. Symptoms are usually apparent at birth or during the first few months of life. SMA is degenerative, hindering the ability to walk, stand, eat, speak, breathe and swallow. SMA Type 1 babies have floppy limbs and develop serious respiratory problems. Most children with this type of SMA rarely survive their second birthday. SMA can happen to anyone. There is NO cure.
However, exciting research progress means the first drugs are now in clinical trials, with others in the pipeline. Specialists know what causes SMA and what they need to do to develop effective therapies. They are on the verge of major breakthroughs that will strengthen SMA affected children's bodies, extend life, and eventually lead to a cure.
Organizer
David Razzell
Organizer
