BMF Liverpool are raising money for one of their members family, who's child Holly has a very rare condition called Trisomy 9 Mosaic (T9M). BMF Liverpool members are going to run run 10,000 miles between them over 15 weeks. They will be running anywhere from 200 up to 1000 miles each. This works out at 2.6 up to 11 miles a day, with only one rest day a week! This is going to be very challenging for the BMF members, who's fitness vary greatly. But we are all hugely motivated to raise money for Holly Kitchen. This will enable her family can continue to give Holly the best care and quality of life that she deserves.
At such a young age Holly's story is already a long one, but one worth telling. Please take a moment to read her story, and then help by donating to our great challenge.
Holly Abigail was born 9th December 2009 in a critical condition. She required instant resuscitation and had a machine to breath for her for the first 24 hours of her life. She spent her first 2 weeks in the Special Care Baby Unit at Whiston Hospital receiving round the clock care. Despite the odds, Holly was discharged the day before Christmas Eve, the best Christmas present ever.
Doctors expected Holly to have either Cystic Fibrosis or Downs Syndrome after she was found to have an Echogenic Bowel during the 20 week Ultrasound Scan. She was tested for both of these conditions and they came back negative. She did have two holes in her heart. Attempts to close the remaining hole have failed so far. Holly will have more heart surgery, hopefully, when she is bigger and stronger.
At 6 weeks of age Holly was diagnosed with Spina Bifida and had Tethered Cord Syndrome, which was successfully operated on in September 2010.
At 3 months of age Holly stopped breathing. Her consultant referred her to Genetics to see if they could find out what was going on. After an anxious 8 week wait, Holly was diagnosed with Trisomy 9 Mosaic (T9M), when she was 6 months old. The Genetics Consultant said that she has never met nor diagnosed anyone with the condition and the only information she had was what she found on the internet. We were told that she may not see her second birthday and she will probably never walk or talk due to Gross Development Delay. After weeks of research into this condition it was discovered that there have been less that 30 people diagnosed globally and babies who have T9M do not usually survive pregnancy let alone birth! We have since found a few more.
In November 2011 it was discovered after a Video Fluoroscopy that Holly was ‘Aspirating’, basically her food and drink were going into her lungs as opposed to her stomach. This shocked the specialists as she showed no external signs, for example, choking or coughing. Holly is now fed via a Gastrostomy (tube) into her stomach, a Mic-Key button.
In April 2013 a Barium Scan showed Holly had Malrotation and Non Rotation of her intestines, a potentially life threatening condition therefore in August 2013 she underwent lifesaving surgery where they also removed her appendix as they were in the wrong place. She spent a week in hospital and recovered quickly and always with a smile on her face.
In September 2013 Holly sat all by herself. She even went one further and sat herself up from lying down, despite being unable to roll over or move herself around whilst lying down. In March 2014 Holly, after hours, weeks and months of showing her and encouragement began to bum shuffle. At nearly 4 ½ years old she moved all by herself. Holly wasn’t going to stop there. On the 19th December 2014 she took her first steps aged 5 years 10 days. We were elated watching a miracle happen in front of us.
In 2015 Holly developed Scoliosis in the base of her spine and at the top of her spine. This is devastating news for Holly as it could progress to severe curvature and stop her from walking in the future, as it has with other T9M children we have found across the globe. Holly can’t get herself up onto her feet or sit down but once on her feet she walks everywhere, dependent on the ground, and she is into everything. She started full time in a special needs school in September 2015 where they ran a number of progress tests to determine where Holly was mentally and physically. The tests showed that she was mentally aged around 8 months and physically, as she is able to walk once on her feet, she is around that of a 12 month old. She absolutely loves school and although she has no communication, she gets what she wants using eye contact. She gets so much enjoyment watching her peers, especially the boys playing and tries to join in.
All of the doctors, specialists, consultants and medical staff in Alder Hey and in the Community have very little knowledge of T9M as it is so rare; therefore, they are unable to answer any questions. No one knows what the future holds for Holly, therefore, we live on a day to day basis. All we know is that with your support we can make positive changes in Holly’s home that will enable her to live a more comfortable life just like everyone else, things we take for granted, things she will never normally achieve and raise awareness of this condition