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To Those Who Have Stayed By My Side With Sanfilippo Syndrome

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Being a mum to a child with Sanfilippo syndrome has been my most challenging job, a job I never thought I’d possibly be able to do, but I’m doing it.


With a great team behind me.

Things have changed since my child’s diagnosis. I am now a stronger person than the person I was before. If I believe something’s wrong, I’ll say it. If I’ve done something wrong, I’ll say sorry. I’ve learned that life’s journeys can be difficult and everyone has their own path. You have to be there for each other. I wouldn’t be the person I am today without my close friends — my true friends.

Over the years I’ve lost what I thought were good friends – friends who cried with me when Tillie Mae was diagnosed with Sanfilippo, friends who promised me they’d be by my side every step of the way. For reasons I’ll never understand, they are not here today. We can walk past each other like strangers. This hurts so much more than people know.

With that said, I’m lucky because I have some amazing friends who have stuck by me. They are the most precious of all. The road I’m on is not easy, but with my friends I can deal with anything Sanfilippo throws at us.

So thank you to the friends who pick me up when I’m down, to the friends who know me inside and out, and to the friends who send the “are you OK?” text. Thank you to the friends who helped with the school run, the friends who say, “get dressed, we’re going for dinner,” and to the friend who is going through her own difficulties, but takes the time to call to see how I’m doing. Thank you to the friends who cry with me, never allowing me to feel alone. Thank you for seeing me as Michala, and not pitying me.

To the friends who include me, I may say no to a girl-weekend away, and I may say no to a night out. It’s not because I don’t want to, it’s because I feel shattered from the days/weeks/months of sleepless nights and worries that come with having a terminally ill child.

To all my special needs mothers, we have a friendship like no other, and are there for each other through all the ups and downs. We truly understand each other.

And my mum, my best friend, thank you for being part of making me who I am today. My strength comes from you.

Paul my husband, my soul mate and my best friend, I’m so happy to spend the rest of my life with you.

Thank you all for being my friend on our journey with Sanfilippo syndrome.

Follow this journey on Tillie Mae’s Facebook page

Originally published: September 26, 2016
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