Saying Goodbye Has Never Been More Difficult

Everything comes to an end in this world, but sometimes we wish we could have a bit more time before the special things in life do.  If we could, we’d make time to stand still for a short while, just long enough that we could pause and enjoy a special memory, a special person, a special moment, for just a little longer.  Today was one of those days.

Dr. Julian Raiman came into visit with Isaac this morning for one last time before he heads back home to the UK to continue his stellar career in his home country.  He dropped in for his last visit with Isaac, his last check-up, his last report taking, his last few moments caring for our son.  It was a difficult time for us as parents and our kids, and I didn’t want the visit to end because, when it did, our time together would officially be over.

Julian has been with Isaac and our family for over 10 years.  He has grieved with us as he’s given us bad news, cried with us as we’ve adjusted to new circumstances in life, and celebrated with us during health improvements and triumphs.  More importantly, he’s guided us along this journey – always at the forefront, always in the lead, and always assuring us that we still had Hope for our son.

There aren’t many people I trust with my son’s life, and Julian Raiman has stood out amongst those that I do.  His kind and caring nature shine through when he is with our kids and his loving demeanour has always made them feel safe and secure in the hospital, especially when things have been difficult.

His compassion always allowed him to connect with our rare disease families, and his empathy allowed him to grieve alongside us.   He understands us and recognizes how difficult these journeys are.  At the same time, he always gives families the strength to keep fighting, encouragement and hope that will sorely be missed by us all.

Julian has also led the charge for our children to get access to expensive treatments – treatments that save lives.  He’s traveled around the world presenting to patient groups, organizations, and government officials.

image2-2Julian has led clinical trials and helped pioneer new treatments for our kids.  I was with him at a Denver Patient Symposium recently and he passionately told the crowd that “It’s nice when we have medicines that make us get better.  But it’s just as important to have medicines that prevent us from getting worse.”  To me, that is at the heart of every battle I’ve fought throughout the past decade for our kids, and Julian eloquently summed up the need for us to have access to treatments for our kids in one powerful sentence.  He’s like that – inspirational and uplifting, yet modest and humble at the same time.

Julian has championed our childrens’ causes, he’s tirelessly joined our battles.

He’s been consoling and impactful.  And has made the world a better place for us all.

Julian has been a life changer and a life saver.

And Julian will be greatly missed.

Farewell, Dr. Raiman.  Thank you for all you’ve done for my son, our family, and all the families that The Isaac Foundation has been lucky enough to be involved with.  You are a true hero to us all.

With Love,

The Isaac Foundation