Caydn and Keelin

Folly-family(f)

Caydn and Keelin have been diagnosed with a life threatening illness called Spinal Muscular Atrophy (SMA).

SMA is a neuromuscular disorder that affects all the muscles in the body. The neurons that are sent from the brain to the muscles are not firing, hence the muscles in Caydn and Keelin’s bodies are not being innervated and because of this have atrophied (wasted away). Both Caydn and Keelin are unable to support their own body weight. They have never crawled, sat unsupported or had any ability to ambulate independently. They have been reliant on electric wheelchairs for their mobility since the age of 18 months.

Caydn and Keelin require 24 hour care. They are unable to independently go to the toilet, have a shower, get dressed, clean their teeth, brush their hair and set up and Organise their personal belongings such as school resources and favourite past time hobbies like Playstation4. Due to the degenerative nature of this condition their ability to do things for them self is diminished, and each week or month another function they once had is lost. During the night they need to be repositioned a number of times to avoid issues such as pressure sores. This could happen as many as 5-6 times a night….each! They also suffer from severe scoliosis and muscle contractures, which causes severe pain in the joints and it requires physiotherapy as well as hydrotherapy. Physiotherapy can be very unpleasant due to the stretching of unused, tight muscles.

The muscle weakness is not restricted to the distal muscles in the body, proximal muscles such as the ones that help us breath are affected. The ability to cough is diminished. The ability to independently remove secretions from the throat and chest is diminished. Their immune systems are low which in turn affects their ability to fight these infections through normal treatment most of the time. Due to these problems Caydn and Keelin suffer from a lot of respiratory complications such as chest infections and pneumonias plus the secondary illnesses that are associated with these complications such as pleurisy. Caydn and Keelin are ventilated at night to help rest their muscles and to clear their airways, however all this management has not prevented both Caydn and Keelin having numerous hospitalizations for these complications. The family’s life consists of constant visits to Physiotherapists, Occupational Therapists, Neurologists, Respiratory Physicians and Orthopaedic Surgeons. They have regular visits to Paediatricians to keep Caydn and Keelin as healthy as possible and to treat any ailments as soon as possible to avoid hospitalizations. They both have gastrostomy pegs in their stomach that enables them to be fed when they are unwell.

Apart from their disability Caydn and Keelin are normal teenagers who enjoy all the usual things. Keelin is a mad Collingwood supporter (like most of them!) she loves Taylor Swift and follows the Denver Nuggets in the NBA. But by far her most favourite thing in the world is her dog ‘James’. Caydn follows Oklahoma City Thunder in the NBA, Melbourne Victory in the A-League but undoubtedly his passion is ‘gaming’ and films and he is very keen on pursuing a career in the film industry.

We are continually amazed by the way Caydn and Keelin attack life. Their determination to overcome daily obstacles is unbelievably motivating. Caydn and Keelin have taught us the real meaning of the words resilience, determination and fortitude. They are true heroes, in every sense of the word and are an inspiration to everyone who comes in contact with them.