Hunter’s Hope was formed in honor of my sweet, funny, “best guy” Grandson, Hunter. My dear friend Sheri, whose sons also have an (ultra) rare disease and I spent many coffee dates talking about how we needed to be proactive in furthering research, helping others in our situation and increasing awareness. So, here we are, committed to making a difference for the better.

I’ve learned so much on this 8 year journey and I expect I will continue growing, studying and feeling things I never dreamed would be a part of my life.

Having a (grand) child with a rare disease is lonely, devasting really, harsh and yet you find joy you never knew existed and hope you thought was gone. You literally, make yourself, live in this day and try not to let the future control your thoughts. I have the privilege of being a coordinator for Duchenne families in our area and have met many amazing Duchenne and rare disease people through conferences and facebook. I’m an empath, by nature, so I would like to think that I have a decent idea of what our families experience.

What I’ve gleaned is that everyone deals with this differently. Some are very involved, seek all the information they can and others prefer to move through this quietly. That’s ok, there is not a wrong or right to this!

Initially at diagnosis you are shocked and grieved in ways you never knew existed. For me personally, I watch my beautiful daughter and her husband as they are overcome with the pain of this diagnosis and although I am not Hunter’s parent, I am his Nana. I see 2 generations desperately trying not to get consumed with the inevitable. I also see a very happy little boy that is funny, enjoys school, his friends, loves his family and dog and lives his life to the fullest. And we all revel in this beautiful child. Through my own process, I was told that we are in a state of constant “anticipatory” grief. We grieve what could/should have been, the things that our sweet boy will never get to do, the reality of the future, then the losses as the disease progresses and whatever else Duchenne throws at us.

Of course, there are the health and care decisions. First to find where you feel your child will get the care you expect, then to determine if you can get to where that care is, if you can afford it and if insurance will allow it. Many families pay for everything out of their own pocket, with no assistance. Regardless, if they have assistance or private insurance, they are stuck in a system that will ALWAYS deny the first application for a wheelchair, insurance companies that only allow 1 chair every 5 years even if your child no longer fits in their current one and on and on and on. Everything is a fight, even though this is a disease with a known prognosis and outcome.

I’ve learned that every single decision a family makes is a BIG DECISION. Even what seems little, will have an impact on the dynamics of the whole family. You are always having to think ahead. “We need new tires, but in the next 3-6 months we will probably need a wheelchair accessible van. Should I spend $800 on new tires, or wait and use this toward future transportation? How am I going to afford this new/used van we need and buy tires?” “Where are we going to live? We need an accessible home, how will we afford an accessible place to live, pay our medical bills, get an accessible van and all the other things we will need?” It can quickly get overwhelming.

So, what do we have? Families with a devastating diagnosis, a broken system that requires them to fight for what their child needs, significant financial stressors and trying to make the best decisions to care for their sweet child.

At times it is hopeless. I HATE that feeling and try desperately not to live/stay there.

Hence, Hunter’s Hope for Duchenne and DEGS 1 Leukodystrophy. Our mere existence is to provide HOPE, through funding research to find life sustaining treatments, financially helping families with non covered insurance equipment and assisting with expenses that will improve their child’s life and helping our community to understand these rare diseases and the journey of these beautiful families. We will make this easy for families that apply, because this should not be a fight!

Our team is amazing. Three of our board members live in the rare disease world and the fourth has experienced the grief of losing a child. We pray for a successful not for profit that honors God and makes a HUGE, POSITIVE IMPACT! We will be the ones to FIGHT for those who can’t and we will FIGHT for these children to have a future filled with HOPE!

As the Board Chairperson and a Director of Hunter’s Hope, I am greatly blessed to have the experience to move us forward. Most of my career was spent as a Director for and with non profits and experiencing the difference that they can make. But nothing good happens alone! It is with the strength of those that partner with us that we will bring this HOPE!

I recently heard this old African proverb: If you want to go fast, go alone. If you want to go far, go together.

Hunter’s Hope for Duchenne and DEGS 1 Luekodystrophy will “GO TOGETHER”.

Thank you for taking the time to read all the way through this. Please “GO TOGETHER” with us, in whatever way works for you. We need YOU!

Board Chair and Director: Susan Samuelson