Ongoing Support for Logan

Logan Jason Maybon was born on 21/11/12. such a perfect little baby boy with so much already on his plate. Several Drs appointments and tests Logan was diagnosed with Phelan McDermid Syndrome at 10 months old. Phelan McDermid Syndrome is a rare Genetic Disorder. Logan is 1 of 53 in Australia and 1 of about 1300 worldwide. As part of Phelan McDermid Syndrome Logan has developed some minor and some major medical conditions. Logan has * Torticollis, Plageocephaly, Severe Tongue Tie as a new born which have improved/ been fixed over time.

He also has * Severe Global Hypotonia * Bilateral Severe Hydrouretronephrosis (Grade IV bladder Reflux and megahydroureters) * Low functioning kidneys *Bilateral un descended testes * Sleeping issues * Chronic Constipation * Moderate to Severe Gastro-oesophageal reflux *oro-pharyngeal dysphagia (silent aspiration and nasal regurgitation ) * neurognic blader * Laryngomalacia * Sensory Processing Disorder (oral) Logan is on a puree thickened diet and is spoon fed and drinks from a bottle only. Logan is currently been catheterised (by mum and help of dad) twice a day to assit in maintaining the health of his worsening kidneys due to the bladder reflux.

Living in a small country town required us to travel ALOT with Logan to ensure that he was able to get the medical treatment he required. Just to see a Pediatrician we had to travel 200km round trip and the many hospital stays to the closest BIG hospital in Armidale. Some of Logans testings to be done in Tamworth which is 416km round trip but most of Logan's tests and specialist appointments and tests are 853km round trip.
All this traveling and appointment dates required alot of time off work, all Rochelle's sick leave and holiday leave were taken to ensure that Logan's needs were met and he made all of his needed appointments.

In December 2014 we were blessed with a second child Matilda. I was lucky to be able to take Maternity Leave from my then job as the Early Intervention Teacher within the Glen Innes Community a service in which ironically my son required to assist his learning and development.

After changes in Logans health and recent medical findings we decided that it would be best that I do not return to work and that I become a stay at home mother to both Logan and Matilda (Full time carer for Logan). This allowed me to take Logan to Hydrotherapy in Armidale each fortnight and Early Intervention Playgroup in Inverell each fortnight and to travel the long distances to and from the 4 locations for tests, specialists and developmental playgroups.

Living on one wage with 2 children and one who has severe special needs has a huge impact on financial status.

Any money which is donated will 100% be going to benefiting Logan and his needs. Through purchasing equipment, medical items and  as Logan is getting bigger we are needing to renovate parts of our house to assist us with maneuvering Logan and caring for him eg. in his bedroom, lounge room and bathroom etc...

We are SO grateful for your assistance.
  • Mitchell Jones 
    • $50 
    • 56 mos
  • Matt Elliott 
    • $500 
    • 57 mos
  • Matt Elliott 
    • $500 
    • 58 mos
  • Veronica Barwick 
    • $50 
    • 59 mos
  • Matt Elliott 
    • $500 
    • 59 mos
See all

Organizer

Shell Maybon 
Organizer
New South Wales
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