Ella is normally a bright, active, independent and sociable 15 year old girl, forever smiling through thick and thin. However she is currently very unwell, lying in a hospital bed in Crumlin Children’s Hospital for over 4 months now, having been diagnosed with Gastroparesis and related dysmotility and digestive issues. Put simply, Ella can’t eat or drink anything orally and can’t tolerate enough through traditional tube-feeding methods to give her the nutrition she needs. Ella is now reliant on IV fluids which means she can’t go home. We live 2 hours from the hospital and she isn’t strong enough to travel that far and be back for her next bag of fluids. She has not seen her room, her dog and all her stuff in 5 months. Due to covid there has been no visiting in the hospital apart from her Mom and Dad on a rota basis.
Given the limitations of the medical system here, Ella is without a plan that can provide her with the necessary assessments and treatment options to address her condition and to provide the nutrition that a teenager needs for their normal development and growth, so that she can get home, thrive again, and have a quality of life that all teenagers deserve.
Many of Ella’s health complications are associated with her underlying condition called Ehlers Danlos Syndrome. This is a rare disease caused by a collagen deficiency that results in defective connective tissue throughout the body. This means the glue that holds the body together is faulty and joints and organs can suffer from excessive stretchiness, but poor elasticity resulting in many complications. It is also under-recognised by many doctors and often mis-understood, resulting in difficulties with diagnosis and receiving the appropriate treatment.
Ella has had many difficulties arising from her condition, particularly concerning hypermobility issues, including subluxations, dislocations and muscular scoliosis. To deal with her loose joints Ella uses special crutches, walking sticks and a wheelchair. She has many pieces of special equipment to help her deal with normal day to day tasks we all take for granted. Until now we have always managed to find the appropriate support for her, including dedicated orthopaedic consultants, physios and rheumatologists in Ireland, with sufficient knowledge and expertise in her condition. Ella’s superb attitude and resilience has also ensured she has successfully managed various issues as they arise.
However in the case of the current gastro-intestinal system failure, Crumlin Hospital do not have the range of assessments and treatments needed to address her severe symptoms with life-changing implications.
Our last resort to get Ella back smiling and eventually home again is to have her treated abroad where there are specialists in gastroparesis and issues associated with Ehlers Danlos Syndrome. Following much searching and appropriate referrals, we have begun engaging the services of a leading paediatric GI consultant in the UK who has substantial experience of dealing with many other children with these symptoms and with Ella’s underlying condition, and who really wants to work with her and help her to address her issues. In particular, given the long length of time she has had her GI issues time is of the essence now to ensure she is fully assessed and treated appropriately.
This GI consultant is very experienced and has a network of other experts to provide additional assistance in her treatment. He is very excited about what he can do for Ella, using latest diagnostics, pioneering studies and treatment options that have proven successful elsewhere, so that he can get Ella on the road to recovery and using her digestive system again.
To achieve this, we need to raise sufficient funding, to get her to the UK, and to cover transport, medical and accommodation costs associated with assessments and treatment there, under a leading team of experts, with whom we have every faith, given their renowned experience and innovative plans.
Having a rare disease is tough but having one that most doctors have limited knowledge or experience of dealing with is even harder for a 15 year old child, so Ella is lying in a hospital bed for almost 5 months now, being told by various doctors ‘I’m not a specialist in this’, ‘We don’t have those services for children in Ireland’ and ‘You don’t fit the criteria’. Ella is getting weaker each day, with increasing complications and after all this time there is still no plan to get her home, treat her condition, manage her pain or give her a quality of life. Now we have the possibility to give Ella an opportunity at getting a quality of life back, but we really need your help.
Ella misses her friends, her family and her life. Help us get Ella a quality of life back. We aren’t expecting miracles but Ella deserves to be able to come home to Roscommon where she is loved and cherished. Ella deserves to be given the opportunities that kids with her condition in other countries get. Ella is so weak and exhausted and we don’t want to see her lose her special smile that we all know her for. Ella is the victim of an under-resourced health care system where if your condition or symptoms don’t fall within the services available, then you face a difficult time with limited options. No team has been able to help Ella so she needs your help, please donate what you can to help us get Ella to someone with the experience and the willingness to get her fight and smile back.
DonationsSee top donations
- Robert Mills
- Aoife Cunningham
- Martin & Maureen Conway ( Leitrim)
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