Fionn is currently attending a number of hospitals and centres, this will continue and increase in 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 April 2020.The purpose of this chair is to enable Fionn to lead the way when he is outdoors with his friends and family to save his energy. At the same time a suitable wheelchair adapted vehicle will be required.

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 Fionns and his brother and sisters emotional and psychological wellbeing.  All of our childrens emotional wellbeing is a most serious concern for our family and we need to plan financially for this as well as the other areas.