Jakob’s favourite colours are blue, red & green

Jakob lives in Queensland

Biography

Jake was born on the 23^rd of January 2003. He was born 7lb8oz and 58cm long, so he was quite a long and scrawny baby, one nurse even commented he was like a skinned rabbit. As he was 10 days overdue and had to be induced he had quite a difficult birth resulting in being taken straight to intensive care as he had breathing difficulties.

Jake was unable to breastfeed as it turned out he had a high palette and a large overbite to deal with and was never able to attach, though this was not discovered straight away and I persisted to try, my forcing the breastfeeding and him being unable to attach was quite distressing for both of us. After a few days the paediatrician was called to the ward and Jake was referred to the out patients physiotherapy department where he commenced treatment from two weeks of age. At this stage Jake had quite high tone but after a few weeks of therapy he soon had low tone. This eventuated in occupational therapy commencing and later the speech therapy.

He continued with fortnightly visits for therapy and six monthly paediatrician appointments until he started prep in 2007.

Once Jake was in the education system he was not entitled to any aide time until he was verified, so I would take him out of school one afternoon a fortnight and make the 40 minute trip to Roma for speech and occupational therapy.

He finally received verification in 2010 after much pestering from myself and the school and following the genetics’ diagnosis of Sotos Syndrome. After much investigation on Sotos Syndrome we were glad to know that the prognosis is quite positive. The learning problems Jake is enduring now are suppose to even out and he should have an average IQ and hopefully be able to live a self sufficient life.

Sotos Syndrome is a global learning disability as well as an accelerated growth rate. Jake is currently eight years old but is the size of an 11 or 12 year old but with the mental capacity of a 6 year old. So basically you have an extremely tall 8 year old with the educational age of a 6 year old. This has problems of its own as people expect Jake to be able to do as much as older children without knowing that he has the capacity of a child quite a bit younger and physically smaller than him as well.

Combined with the rapid growth rate Jake has a lot of dental problems. As he has the massive overbite and tends to grind his teeth he has trouble chewing tough things like steak for example. His mouth is massively overcrowded and has already had to endure two operations which involved going under anaesthetic. He will have to have a lot more dental work done over the upcoming years.

However above all of the difficulties Jake has had to endure he has always been a happy, loving and caring child. He has a gentle nature and always looks after his younger sisters. Jake also has a great interest in art and spends a lot of time drawing and making things, however he still disappears when it is time to clean up his mess, typical of all boys I suppose.

We love Jake dearly and love nothing more than enjoying our family time. We are actively involved in our community and Jake and his sisters have developed a great many friendships with his fellow students and their families.

We look forward to the future and are hopeful for Jake’s future prospects