Declan's Journey

Meet Declan :) Declan was born with Apert Syndrome. A condition that affects the growth and development of his skull meaning he is required to have surgeries to expand his skull as he grows until he is a fully-grown man. Other characteristics of the condition that affect Declan include Syndactyl of the hands and feet. He was born with his fingers and toes fused together, he has had multiple surgeries to release his fingers however cannot bent them. His toes will remain fused together. He also has fused shoulders and cannot raise his arms above his head making simple daily tasks difficult. 

 Declan is required to attend appointments in Adelaide twice a year for a week and up to a month depending on what is required. His previous visit was initially only supposed to be a week and turned into almost a month as he had to have an Intra cranial monitoring procedure. This meant his Neuro surgery team had to drill into his skull and pace a monitor inside his brain for 48hrs to monitor the pressure in his skull. This trip cost his family close to $5000 in medical expenses, travel and accommodation. The results of the monitoring have shown increased pressure on Declan's brain whilst he is sleeping and his doctors feel this may be due to having a setback midface and restricted airway and have requested a sleep study to be conducted. 

 Declan and his family returned home and have since been trying to arrange a sleep study. All the local sleep clinics have refused due to the nature of his condition and the families health insurance fund have refused to pay for the sleep study due to him having a tracheostomy tube for the first 11 months of his life and they are therefore deeming it as 'possible pre-existing'. This was determined by a third party assessor and his family have done everything they can with the assistance of his medical team to amend this however have not been successful. 

 Declan requires a sleep study as soon as this weekend and a private hospital in Brisbane have agreed to complete the study at a cost of almost $1000. 

 The results of the sleep study will be sent to Adelaide to determine if his next surgery is to happen immediately or put off for a few months however he will require a CPAP machine which will be 100% cost to his family. 

 When surgery is scheduled Declan will require a Mid face advancement where his complete mid face will be brought forward by his Craniofacial team and he will be fitted with a Halo and his family will be taught how to adjust on a daily basis. Declan will be in hospital for up to 8 weeks depending on his recovery. When Declan is able to come home h will require a lift be to enable him to recover and sleep at a comfortable angle and to assist in his care. This will cost up to $3000. 

 Declan is now 10 years old and so far in his life has had more than 10 surgeries and procedures and will require these to continue until he is approximately 25years old. 

 Other than the major medical expenses there are many other expenses relating to his condition that the family regularly have to pay for and having a 6 year old with ASD and his own expenses it is beginning to put financial pressure on the family who are facing in excess of $10,000 in medical expenses for Declan within the next few months.



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Kiara Searby 
Beerburrum, QLD
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