Master J2015

My name is Jakob and I am 2 years old. I have an undiagnosed genetic disorder. My body doesn't work the same way as other kids. I do things in my own time and in my own way. The differences in my body mean that I have needed lots of time in hospital and different medical interventions since I was a baby. I now have to work pretty hard at my different therapies to help me do lots of everyday things like eating, listening and communicating, sitting and crawling, and most importantly playing. I LOVE being with my family, having turns in my swing, listening to music on the radio and playing with my toys. My Mum and Dad think I'm pretty special and one cheeky little boy.

You can read all about me on my Facebook page and website:

www.facebook.com/jakobengley

www.masterj.org

My Story

Jakob was born at 36 weeks. He was very small for his gestation and had some differences in his physical appearance that raised concerns. He spent many months of his first year in hospital, mostly for respiratory problems. He has had lots of testing completed but continues to remain undiagnosed. Some of the differences about Jakob include; his bones are not growing correctly, he is very small, his limb lengths are shortened, he has a bilateral hearing impairment, he has hypotonia of the muscles, chronic micro aspiration, ongoing respiratory issues, feeding issues, significantly delayed fine and gross motor skills and no verbal language.  Jakob has required lots of different medical interventions over the last 2 years. At present he continues to remain on home oxygen therapy, is PEG fed and requires a number of different medications to be administered throughout the day.

My Needs

In the last 6 months Jakob has become much more medically stable. This has allowed him to participate in therapy sessions more often and for us to investigate further therapy options. He regularly attends physiotherapy, speech therapy for feeding and language development, and has visits from a teacher of the deaf. This year we hope to explore more clinic based occupational therapy and speech therapy options as well as attending an intensive therapy program (including TheraSuit Therapy and CME) based in the U.S. A. This particular therapy is not yet available in Australia and we hope that it will help Jakob with activities like crawling and sitting. He uses different specialised equipment to support his development and this need will continue as he gets older.  Jakob also has to travel regularly to the city (about 2 ½ hour's drive, each way) for reviews with his various medical teams, and continues to need medical interventions to support his day to day care. 

HOW YOU CAN HELP

- By pressing the 'donate now' button on my web page to help raise funds so that I can, participate in my required therapies and get to the U.S.A for intensive therapy.

- By visiting my Facebook page and website to learn more about me and to stay up to date with my progress.

- By participating in my other fundraising events which you can learn about on my Facebook page or website.

- By sharing this page with you family, friends and colleagues, and inviting them to donate.

- By offering help with practical things, such as organising fundraising events or offering support.

All donations of $2 or more are tax deductible. The Developing Foundation commits 90% of funds raised or donated to our team. The remaining 10% is used by the charity to cover credit card charges, administration and support.

For any more information on how you can be of help or if you would like to ask any questions about Jakob, please email us at jakobengley@gmail.com or call Dani, on 0409 838 276. Thank you so much for your support! It means the world to me and to my family.

Jakob, Mark and Dani xx