Save

Save

Save

Save

Save

Seeking answers and solutions for developmental disability through early intervention practice and research. 

Master J

Fundraiser: Master J
Event Date: 11/04/2014 9:00:00 AM - 30/06/2015 9:00:00 AM
Donation Target: $33,000.00 (AUD)
Current Total Raised: $13680.00 (AUD)
Master J

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

$33,000.00
$16,500
$0

Funds Raised

$13680.00

Fundraiser Supporters:

Steph Oldfield 23 January 2017 $150
I'm sorry how late this is. I Think about you often and hope things are going well xxx
Anonymous 7 September 2016 $20
Sending lots of love and prayers to you all x
Paxton Farley 1 August 2016 $290
For Master J :) xx
Hunter and Lincoln Uren 24 July 2016 $20
On behalf of Malia's 1st Birthday..
Louise savige 24 July 2016 $30
On behalf of malias birthday. All the best x
Anonymous 29 June 2016 $1,000
Martin Irwin 7 June 2016 $150
Carly Rainbow 5 April 2016 $20
Tara Quenault 19 January 2016 $50
The 27 November 2015 $20
On behalf of Emmy's 3rd Birthday.. Truely inspirational the strength of you all.. Sending best wishes for your therapies little man..
Louise savige 22 November 2015 $20
Barry Zeldenryk 16 November 2015 $50
All the best in reaching your total and getting the treatment needed for Master J! Lisa and Barry Z.
Jess johnson 11 November 2015 $50
Hope this helps a small amount dani xx
Maree Hall 11 October 2015 $50
Hopefully this little man will be given the chance of a far better quality of life with the generous support of the local community. Fingers crossed.
Anonymous 11 September 2015 $100
Harmonie Smith 29 August 2015 $290
Harmonie Smith 25 November 2014 $550
CMV Staff Foundation 21 November 2014 $5,000
Sharon Burleigh 1 September 2014 $500
Gatty and tayla 10 August 2014 $250
Goodluck Jakob! You go little man!!
Jason Van Berkel 8 August 2014 $50
Missy 5 August 2014 $500
Good luck with everything, hope the trip goes well love from Jeff missy and kids :)
Louise Purkis 29 July 2014 $50
Good luck Dani and Jakob! X
Steve & Caroline 30 June 2014 $50
Best of luck with everything Dani and Jakob!
Mark Kilinski 6 June 2014 $50
We read your story today in Armageddon Cakes and it deeply affected us. We hope that your trip to USA brings great progress for little Jakob. Good Luck!
Anonymous 26 May 2014 $30
All the best to you and Jakob.
Natasha Hammond 6 May 2014 $20
Jess 1 May 2014 $0
Peter Engley 29 April 2014 $1,500
Anonymous 28 April 2014 $10
Leonie Engley 28 April 2014 $1,500
Brett & Wendy Farmer 21 April 2014 $100
I hope this helps to get Jakob on his journey.
Lisa Oborne 18 April 2014 $20
Jane Gleeson 13 April 2014 $100
"With all my love to Dani and Jakob xxx"
Debbie and Peter Williams 13 April 2014 $20
"Good luck with the fundraising All the best"
Mukesh Kumar 13 April 2014 $500
"With love for Jakob: Mitika and Mukesh"
Tricia Gray 13 April 2014 $50
"I know every little bit helps so here's a little to go towards J's needs. Love Trisha & Glen xoxo"
Jessica Zaghet 13 April 2014 $500
"Everytime I see you Jakob, your getting better and better. Your an inspiration Dani xoxox"
Jason Peters 13 April 2014 $20
"Good luck Jakob... Love Victoria xo"
Like our Facebook Page
Print this pageBookmark SiteTell a Friend