Jobe Koistinen

Jobe has Sanfilippo Syndrome. Luckily his twin brother Tate does not. Without treatment, Jobe will not live to adulthood. You can help children like Jobe by contributing to our campaign to raise funds for research into this childhood dementia.

Timothy and Tenille Koistinen, the proud parents of twins Tate and Jobe had their lives turned upside down when their son Jobe was diagnosed with Sanfilippo Syndrome in March 2018. At the tender age of two, Jobe's life, while only just beginning, will be cut short by Sanfilippo.

As a parent, all we hope to do is protect our children, fight for them and do everything in our power to rid them of pain. And we will fight. Jobe has proven to be a fighter since starting his journey of life at 29 weeks. He chose us to fight life with him. He continues to fill our hearts with bursting endless love everyday and has his fraternal twin brother Tate by his side protecting him every step. We need hope. Hope for progress in research and hope for access to clinical trials to bring us closer to a cure.

The impact the diagnosis had on our family and those loved ones around was one of utter devastation. We were grieving for our son's life, and yet he was still this sweet, thriving two-year-old boy, asymptomatic at this stage. We have continual feelings of disbelief and a feeling of complete helplessness that we cannot protect him, and cannot give him the future we had hoped for him.

Every single day the reality of Sanfilippo sneaks into our life to remind us of our helplessness, but it also reminds us to be grateful. We look forward to making memories and ticking off our bucket list for Jobe and Tate whilst we have the opportunity. We live to make memories, and we live for hope in research, trials and the ultimate hope for a cure.

We are hopeful for the advancement of clinical trials, and we are inspired by the Sanfilippo village and online communities linking families and networks across the globe sending the same message of hope and strength.

We hope Jobe will continue to be surrounded by a loving community, a supportive village of strength, understanding and compassion. Everyday we will strive to be the best version of ourselves, as we are fighting this journey for him, and already he has taught us so much and brought us so much love.

You can help

Make an online donation

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Host a fundraiser

There are lots of ways you can fundraise. We have plenty of ideas for you in our A-Z of fundraising ideas & you can set up your own fundraising page here

Follow Jobe’s FB page here

$35,811

Raised of $50,000 goal

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A big thank you to our Supporters

The real heroes who are kindly helping us achieve our goal

Grant Richey

$26

Easyriders Smc Albury Wodonga

$2.3k

Kate O’brien

$26

Nichole Murphy

Many blessings to little Jobe! X

$26

Stefan Stella

You’re a little champion Jobe! Much love to you and you’re amazing family! Xx

$1.5k

Wendy Drummond

$105

Ashleigh Skipworth

$26

Firefighters Charity Fund Victoria

$1,000

Beth Miller

Much love to you and your sweet boy x

$263

Gail Neil

Thinking of you from Canada

$20

Nicole Kline-marantelli

Kate Trotman

$26

Sarah Johnson

Ash, Andrew & Millie

$50