Fionn and DMD
It is difficult to explain how it feels to suddenly be catapulted into a new reality where the future you face is so frightening. Maeve and Michael will watch Fionn slowly regress through his milestones and gradually lose independence. Sadly, in Fionn’s particular case his type of DMD is very rare and unfortunately predicts more severe outcomes at an earlier age for him. Muscle weakness already affects Fionn’s walking, climbing steps, balancing and other day-to-day activities we all take for granted. He already uses his manual wheelchair for longer distances and is soon to receive his power chair. Over use of his muscles could do damage and his muscles are not capable of healing due to his condition.
By age 9 it is predicted that he will lose his ability to walk, becoming a full-time powered wheelchair user. It is projected that when Fionn hits 11 or 12 years he will have considerable difficulty using his hands and arms resulting in him requiring assistance with all aspects of his personal care and participation in school. He will need to use voice command to do his school work and fully rely on his family and carers for all aspects of life. Fionn will lose his ability to walk first, his ability to feed himself, use his arms and hands and eventually his lungs and heart will struggle to function independently resulting in dependency on others for all aspects of his self care and ultimately ventilation to allow him to breath. Facing into a future where you know you will watch your child slowly regress through his milestones and lose his independence is incredibly painful. Every moment of joy is tainted with sadness, wondering when he will lose his ability to play football with his friends, chase his big brother dressed up as Spiderman and when he will no longer be able to raise his arms to give his Mammy and Daddy a hug last thing at night. We grieve for our little boy while he is still alive.
Fionn’s ongoing treatment
Fionn is currently attending a number of hospitals and centres and this will continue and increase into the future.
- Fionn is attending a clinical trial in Great Ormond Street Hospital in London since November 2019. The focus of the trial is to reduce the negative side effects of traditional steroids. He will always need steroids and the professionals are trying to treat the side effects of these steroids within this trial. This may or may not work for Fionn. This treatment involves numerous lengthy visits to London over the 12 month period. The time in London is intense leaving Greta and Daniel at home with one parent. Fionn is already showing that he is finding the journey and experience in the hospital hard as the treatments are quite invasive and it is exhausting.
- Fionn also has to attend appointments in Enable Ireland very often with Occupational therapy and Physiotherapy and his older brother Daniel is soon to join a siblings group to support him through his own journey. Fionn will need to wear foot splints at night and during the day. He is soon to receive his manual and power wheelchairs for distance mobility when outdoors.
- Fionn attends routine reviews with the fantastic team at the Muscular Dystrophy Clinic in Tallaght Children’s Hospital. Here he meets the Paediatrician, Neurologist, Endocrinologist, Cardiologist, Psychology, OT and Physio. Fionn will continue to be linked into all of the above services for all of his childhood and increasingly so over the years to come.
- Fionn has been assessed for a power assisted wheel chair which is due to arrive in The purpose of this chair is to enable Fionn to lead the way when he is outdoors with his friends and family , and save his energy for living his best life.
- Fionn will be assessed by Psychology commencing March 2020 to assess his learning abilities. 70% of children with DMD have associated learning difficulties including dyslexia, ADHD and lots of other potentially related challenges.
- The gap between Fionn and his peers ability and independence is going to increase and we need to prepare and plan for this in to the future. Fionn’s parents need to consider Play therapy or Music Therapy now and into the future to support Fionn’s and his brother and sisters emotional and psychological wellbeing. All of our children’s emotional wellbeing is the most serious concern for our family and we need to plan financially for this as well as the other areas.
ABOUT DUCHENNE MUSCULAR DYSTROPHY
DMD is an inherited genetic condition leading to an increasing level of disability through Fionn’s life.
Signs and symptoms of DMD usually show around age 3-5 years with muscle weakness affecting the child’s walking, climbing steps, balancing and other activities.
It is a progressive condition, which in simple terms means it gets worse and worse over time. DMD begins by affecting a particular group of muscles, usually within the legs and hips first. Over time children with DMD will need to use a manual wheelchair, then a power wheelchair as the condition worsens. Eventually the condition will progress to loss of ability to lift their arms and hands up and eventually requiring machine assistance to breathe.
Duchenne’s is life limiting and the average life expectancy of a child with Duchenne’s is mid twenties. There is no cure.
Formed in 2001, Action Duchenne is the first British charity dedicated to supporting those living with Duchenne.
Duchenne UK is a highly focused charity with a vision to fund and accelerate treatments and a cure for DMD.
Muscular Dystrophy Ireland aims to provide information and support to people with neuromuscular conditions and their families through a range of support services.