In February last year, Lacey became poorly with gastroenteritis which left her sick for 3 weeks.
This illness effected her immune system and was diagnosed with chronic fatigue syndrome. For those of you that don't know, Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness, but also includes; sleeping problems, muscle and joint pain, headaches, feeling dizzy or sick, problems thinking remembering or concentrating and more.
Still feeling quite poorly further tests were carried out and in November 2019, she was also diagnosed with coeliac disease. Coeliac disease is a condition where your immune system attacks your own tissues when you eat gluten. This damages your gut (small intestine) so you are unable to take in nutrients.
She’s carried on with her day to day life of being up and down struggling with her chronic fatigue and trying to understand her new diet, which is not easy for an adult to deal with let alone a 9 year old.
Lock down came and Lacey ended up with cellulitis in her eye which was treated with antibiotics.
She then had pain in her jaw so I contacted our dentist and they thought she had an abscess and gave her amoxicillin.
We went to hospital for one of Laceys standard paediatrician appointments and the doctor was shocked at the swelling on Laceys face. She was immediately rushed down to a&e where they started to run all sorts of tests; ultra-sound scans, MRI scans, blood tests and more. After her MRI scan was done the maxillofacial surgeons decided that they needed to operate. The operation took place 5 days later. She was then given more antibiotics as they were sure she has osteomyelitis.
Osteomyelitis is an infection that most often causes pain in the long bones in the legs.
Other bones, such as those in the back or arms, can also be affected.
After 6 weeks she was still in pain but she was now also struggling to walk. Her left foot was causing her so much pain that we ended up back in a&e. An X-ray was taken of her left foot, they then decided she needed an Emergancy MRI scan that day.
The results came back within an hour and the Orthopaedics doctors/Consultants took over. They came into Laceys room and told us that she needed an emergancy operation the next day as they were sure that the osteomyelitis has spread from her jaw to her ankle. They said this was very rare and they had not seen this happen before so Lacey was an interesting case.
The next day the operation happened and they also fitted a picc line into the top of Laceys left arm for the Iv antibiotics that she was going to have to take for atleast 4 weeks. Lacey stayed in hospital for 5 days and was then discharged with the help of the OPAT team. The OPAT nurses team came out everyday to our home to administer Laceys IV antibiotics for the next 4 weeks.
Three weeks after being on the Iv antibiotics Lacey then had an allergic reaction to the medicine. We had to get her back into hospital where they decided she needed to go onto a different IV antibiotic.
The doctor that we saw from the infectious diseases team still thought that it seemed odd that Lacey still had substantial pain in her foot. So the doctor decided that a full body MRI scan needed to happen as she thought Lacey had signs of CRMO Disease.
The full body MRI scan took place 3 days later. At the end of the week we were due to go back into hospital to have Laceys picc line removed from her arm. We came into a room which had 4 people in including a Rheumatologist Professor.
He went on to tell us that Lacey had CRMO disease.
It was such an emotional time for Lacey, for all of us. We sat in the room and cried, even the nurse did poor Lacey was just so overwhelmed.
CRMO is a chronic bone disease that leaves legions on the bones and creates inflammation in them which can be long lasting but can also come and go in bones all over your body. It creates chronic pain which in Laceys case has stopped her mobility being like it once was. She now uses crutches and a wheelchair on a daily basis.
This disease does not have a cure but they do have medicines that can help manage the disease.
Lacey lives on pain killers everyday and has infusions of medication every 3 months. She is unable to go to school full time but manages half days due to the pain and feeling exhausted. She has physiotherapy every 2 weeks at the Bristol children’s hospital, which is amazing, to try and help her build up strength.
All this being said, Lacey is an amazing little girl and such a warrior, she has been so strong these past 20 months and has taken everything in her stride.
As parents we are utterly amazed and so so proud of her, she is the strongest little girl we know and always tries to put a smile on her face.
Raising money for her charity was all her idea. Her words were “mummy I want to help children that don’t feel very well like me I want to make them smile”.
Laceys life has been a rollercoaster for the last 20 months but we are so glad that eventually The Bristol Children's Hospital got to the bottom of it all.
We couldn’t thank the Doctors/Nurses/Physiotherapist/Play-pod team/Cleaners everybody in the hospital they are just so amazing. We are very lucky to have such a fantastic Hospital like this on our door step.
So please if you can add some money to go towards the Bristol Children’s Hospital that would be absolutely amazing and help so many children that need help like Lacey does!
Thank you all for taking the time to read her story.
- Cheryl Howell
- Lauren Sandle
- Ashlee Cooper
- Leo Hancock
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