"Hi Diya"

Every once and a while in this hectic rare disease life you get to witness someone else being incredibly beautiful. You witness a loving heart, a selfless individual.

One day on the Lurie Children's Hospital shuttle, Nick and I took our regular seats at the front of the bus. The back wheelchair ramp door opened, and we heard a lot of crying and moaning. I also heard a caregiver's voice say, "it's OK "Diya". We're going to get you help. Do you not feel good? It's OK we'll talk to the Doctor. I'll tell the doctor you don't feel good and what's going on". We exchanged smiles as they boarded. The caregiver, I believe was hired to take care of "Diya", and they were on their way to an appointment. The shuttle bus driver helped them take their seats and secure Diya's wheel chair. All while Diya's caregiver was kind and offering to help the driver however she could. I was looking forward but fixated on listening to her talk. She was not stressed at all by a sad patient, or should I say friend, and her glowing energy could be felt all over the bus.

During the very brief shuttle bus trip, Diya's caregiver talked to her the entire way. Sometimes there was laughing, crying or moaning coming from the back of the bus. She opened apps on her phone, Diya's favorite ones, and they sang along. The apps were meant to stimulate speech and interaction. She sang, "Hi Diya, Hi Diya, How are you?  How are you? Now your turn" She talked to Diya and said "see now we can talk, it's nice when we can talk." When Diya starting moaning, she asked her what was hurting her and told her she was going to make sure the doctor helped her. She sang songs about shoes, and always said now your turn. Diya laughed, and forgot her pain for a moment. The songs she sang will never leave my head, they were so happy and hopeful.

I stared forward and my throat started to tighten, and I could feel my eyes tearing up. I held Nick's hand because this was a reminder that even our attitudes effect their health and well being. I will never forget Diya's caregiver, ever. She was a sweet glowing bit of energy, and a reminder that you can love a person, you can love your job and the attitude you choose is the one you exude. Her job wasn't easy and she could have easily been put off by the crying and moaning but a literal glow came from this woman.  Thanks for the lesson that day, for the beautiful songs that will never leave my mind, and for witnessing humanity and the great ability to care so deeply for another being.

My fondest love and admiration,

Amy

Kindergarten Jitters

Our sweet Nicholas (Nick) starts Kindergarten.  Kindergarten. We're nervous and excited but it's nothing like what a typical parent experiences when their child goes off to Kindergarten. This is different.

Nick is beating Hunter Syndrome.  He's beating it. We can't even express how emotional this is for us.  Nick is starting in a classroom without a dedicated aid and special education services. His school has those capabilities but he doesn't need them at this point. Nick is going to be in a classroom with kids he's grown up with, and he's going to learn and grow right alongside those kids. We can't even tell you how inspiring, how moving, how amazing this is...it's like a dream come true. This...this is what brings tears not fear of change, not fear he's growing up too fast, or no one will sit with him on the bus, but this accomplishment brings tears. It's very emotional.

Nick has earned this moment.  It hasn't been easy. He's been through a lot of pain, procedures, worry, treatments, appointments, hundreds of needle sticks, loads of scary things and he has made this moment happen. He has. He has earned every minute of getting a desk, sitting on the carpet, being star of the week, and making friends. This is Nick's moment.

Some professionals (very few but some) will tell you, this is not the right thing to do.  Nick will need a dedicated classroom aid, he will need special services, he will have behavioral issues. Some will read from medical publications and Hunter Syndrome brochures verbatim and tell us and you - he will require and need things that a typical kid doesn't - and we will tell you he doesn't along with other professionals who have worked closely with him. This can be a difficult thing when "norms" are developed, and a community of professionals is learning right along with everyone else. Some young Hunter Syndrome patients are emerging who have started treatment early, have been fortunate to be involved in clinical trials and studies, and are experiencing a completely different journey. Innovation is really enabling individualization of this disease, and the best of professionals understand and accept this fact.

Thank you to everyone who has helped him! His nurses, doctors, family, friends, caregivers,nannies, teachers at daycare, mentors, coaches, neighbors, etc. You have helped form this awesome boy!

If you looked at Nick right now, you wouldn't even know he has Hunter Syndrome unless you saw the scars he bares from the ports implanted in his body.

We know that this disease is a monster, and we'll always need to pay attention and ensure Nick is getting what he needs. This will never, ever be behind us. There's no cure, and there is no treatment that's a one time fix. In our own home, we have a reminder of the differences children with Hunter Syndrome can experience as Alex suffers from it as well.  We cherish this moment now, and hold on to its precious significance because we know it could change in a heartbeat.  

If things change, we won't view this as a set back.  We'll just do what's right, and necessary.

Nick will tell you he is scared of a new classroom, that the bus is scary and he's most excited about making new friends and his new backpack. Nick is experiencing what any kid would experience starting kindergarten but we aren't - we are experiencing something more, something amazing.

We love you Nick. Congratulations on this amazing accomplishment! You are our inspiration, the reason why we carry on with courage.  Enjoy your first day buddy!

With love and admiration,

The Cherrstrom Family