Ally Cadence Humphries
09th September 2008 - 18th March 2009
Ally Cadence Humphries was born at 12.36pm on Tuesday 9th September 2008. Ally seemed a very healthy baby until she had problems with her breathing at 9 weeks old. After being rushed into hospital Ally ended up being transferred to another where she spent some time in Intensive Care, with suspected Brochilitis. After this first visit Ally never seemed to recover 100%. Many trips were made backwards and forwards to the doctors, and everytime her parents were told not to worry and were prescribed antibiotics to treat her never ending infections.At 5 months old Ally was rushed in to hospital with breathing problems and ended up in Intensive Care and on life support. After 3 days Ally came off the ventilator by herself and was, once again, diagnosed as having Bronchilitis. It was during this visit that people started taking notice of Ally's lack of head control and general movement. An appointment was made with a Neurologist who arranged many blood tests as well scans on her Brain and Spine. Ally's blood tests were done on the Monday and she returned to Leicester for her scan on Thursday 5th March.
On Friday 6th March the blood results returned and Ally's parents received the devastating news that she had Spinal Muscular Atrophy Type 1, and estimated life span was just 12 months. Ally's parents took her home and cared for her 24/7 with the help of nursing staff visiting regularly. Ally's Christening was planned for 18th March, her parents 9th Wedding Anniversary and the same day her brothers and sister had been christened. This was meant to be Ally's special day.
On the evening of 17th March Ally stopped breathing at home, she was rushed into Lincoln and her parents were told she had just hours to live. Ally was christened just before midnight and against all odds fought on into the next day. All her family came to say their goodbyes, and she passed from this World at 8.37pm, on what was to be her special day, and only 12 days after being diagnosed. Ally was always full of big smiles and she fought right to the very end. She would be so proud today to have a part in helping others.
To read Ally's story in full please visit her Tribute Site at www.allycadence.co.uk
Andrew Glenn Butler
08th January 2009 - 04th June 2009
Andrew Glenn Butler, known as Andy, was the firstborn son of Audra and Alan. He was born on 8th January 2009 after 10 years of marriage, and completed their family.After Andy's parents noticed his lack of movement they took him to a paediatrician who immediately admitted him to the ICU of University Community Hospital in Tampa, on 3rd March 2009, where he underwent many tests. On 17th March, at 9 weeks old, the results came back and Andy was diagnosed as having Spinal Muscular Atrophy Type 1. Doctors said Alan would be lucky if he lived for another six months, and didnt think he would see his First Birthday.
Through it all Andy smiled and laughed, he cooed to music and loved to watch Baby Einstein videos. He loved to be held and even learnt to blow kisses. He was a very happy baby with an unbelievably long attention span.
Over the next 4 months Andy was hospitalised four more times for respiratory and gastro-intestinal issues, including one surgery and another stay in ICU. On 4th June 2009, at just 20 weeks old, Andy lost his fight to SMA.
To read Andy's story in full and to become a part of Andy's Army please visit his Tribute site www.flobble.plushost.co.uk/andy
Séan James Browne-Keating
Sunrise 2nd March 2008 - Sunset 26th November 2008
Séan came into the World on Mothers Day, 2nd March 2008, with a big head of black hair. He was taken down to neo natal, having been born 4 weeks premature. He suffered from jaundice and developed sleep apneas but after 5 days the hospital said all tests were clear and Séan could go home.
For 6 months life was perfect. Joanne adored being a mum and spoiling Séan, he drank ounces of milk and ate lots of porridge. It wasnt until Joanne returned to work and saw another baby born around the same time as Séan that she realised something was drastically wrong, Séan could still not support his head and was very floppy.
Joanne's worst case scenario was that Séan would never walk. Joanne took Séan to see a baby doctor who then arranged for him to be seen by the main Neurologist at the Cork University Hospital.
On 6th October 2008 Joanne and her partner returned to see the Neurologist, where they were asked lots of questions about Séan's lack of movement, then were taken down to see a nerve and muscle specialist. They were told the doctors were 95% sure Séan had Werdnigg Hoffman Disease, otherwise known as Spinal Muscular Atrophy, Type 1.
Séan had never been poorly, never been tube fed, until his last day. Seven weeks after receiving the diagnosis Séan passed away, on 26th November 2008. Joanne stood up in Church and told everyone how thankful she was to have him in her life, and she would live her life over again to have those 9 months with Séan.
To read Séan's story in full please visit his Tribute site www.seanbrownekeating.co.uk
Corben Robert Kemp
27th December 2005 - 21st October 2006
Corben Robert Kemp was born on 27th December 2005. He was the firstborn child to Chris and Janine. Janine had her worries about Corben due to endless chest infections, and colds, and was back and forth to the doctors many times. At 5 months old people finally started listening to her worries. After being referred to a Specialist Corben was xrayed and found to have a an S shaped spine, as well as shaped ribs. This was all part of his condition, which was later diagnosed as Spinal Muscular Atrophy Type 1.
Janine and Chris did everything they could possibly do with Corben, they crammed as much into the days as they could as it was unknown just how much time they had left. At 6 months old Corben and his family celebrated his 6 month birthday with a cake and paddling pool, and had fireworks to mark the special day.
On 15th July Corben was having trouble swallowing and had to start being fed via a feeding tube, due to the risks of aspirating into his lungs. Although Corben could not eat food he enjoyed being given different tastes. He enjoyed most things and that was obvious by his big cheeky grin. He was nicknamed "Cheeky Little Monkey."
On 6th September Corben got yet another chest infection, and his parents were told to prepare for the worst as he had only a matter of days left. Despite this Corben kept on fighting and held on for another 6 weeks. At 2 minutes to 6pm, On 21st October 2006, Corben lost his fight to SMA and passed away surrounded by family.
To read Corben's story in full please visit his Tribute site www.corbenkemp.co.uk
Alex Camwell
05th October 2008 - 06th May 2009
Alex was born on 5th October 2008, his proud parents took him straight home where his brother and sisters were overjoyed to meet him. Alex always seemed a little chesty but his parents were told it was nothing to worry about. As the days turned into months Alex came on in leaps and bounds mentally, but physically seemed very delayed in his movement. A couple of months later his parents were very concerned when he had a chest infection and was struggling to take his milk. They decided to take him to the doctors, and it was then that he was referred to the hospital.
After seeing the consultant Alex went downhill very fast and was admitted for tests. Whilst being NG tube Alex turned blue, he had aspirated on his milk and stopped breathing. The doctors worked on Alex and got him breathing again, but as he was still struggling he had to be ventilated. This meant a transfer to another hospital with a PICU unit.
Tests continued and after 2 weeks the results came back. Alex had Spinal Muscular Atrophy and it was Type 1, he was going to die. An emergency baptism was arranged with family and friends gathering in the small hospital room then the decision was made to turn Alex's ventilator off. His parents told him it was ok for him to go and that they would always love him. They waited, and waited but Alex wasnt ready to give up just yet.
Alex was transferred to Rainbows Childrens Hospice where he enjoyed the rest of his days. He went to 'The Beach' and had a Birthday Party, he found his love for music and sung with the choir. Alex got weaker and changes in him were apparent. His morphine was increased to keep him comfortable, as was his oxygen.
Alex passed away peacefully in the arms of his parents at 5.30am on 6th May 2009 and outside the most beautiful rainbow appeared.
To read Alex's story in full and to help raise funds in his name please visit www.actfund.co.uk
Ella Sergiew
3rd May 2010 - 29th May 2011
Ella was born into water at home on the 3rd of May 2010, first child of Joe and Justyna Ella was beautiful and seemed perfect in every way. But after 4 months she was diagnosed with SMA type 1 after concerns about the lack of movement in her legs. Despite Ellas diagnosis she had many months of great health free from infections and other problems. Rather than getting weaker as we expected it seemed that Ella was getting stronger each month and progressing, putting on weight, moving onto eating solids and developing despite the obvious limitations in her movement.
She was a very happy child who put a smile on everybody's face, she loved to laugh, play, babble and watch her favourite Cbeebies shows. We enjoyed many trips with Ella to parks, gardens, zoo's and many other places. We were fortunate that she was so well for so long that we were able to fly abroad several times to visit family.
Unfortunately though Ella’s good health wouldn't last for ever and 1 month before her first birthday Ella was taken to hospital after having breathing difficulties related to her secretions. After being on oxygen for several hours and given antibiotics we were sent home the same day. Ella fought a small infection and after a few days at home was back to her normal self, but the event seemed to have weakened her physically and she was struggling with her swallowing. This led to her having an NG tube put in to help her feed.
The following weeks were great and although Ella had to be suctioned more often and we had started using a nebulisor to help break down her secretions, she seemed to have picked up in strength and power as she was getting enough nutrition at regular times due to the NG tube feeding. Ella was as happy as ever and so were her family, this culminated in her first birthday, a point we thought we might not reach upon initial diagnosis. We celebrated with a small birthday party with family and friends at home with lots of presents, balloons and fun. It was a very proud and happy day for all.
Unfortunately though Ella found it more and more difficult to manage her secretions and on the 29th of may Ella passed away with her parents beside her. She had been to weak to fight a 2nd chest infection she had caught after struggling with a small cough for a few days. She passed away peacefully and in a dignified way aged 1 year 3 weeks and 5 days.
To donate funds in Ella's name, please visit our Butterfly Funds page.