Written and presented by Christina Gentle at the 2018 RARE Gala

GalaSpeech

Hi everyone, thanks for being here tonight. I’m Christina, Jessica Gentle’s sister. If you were at the Gala last year you might remember the great speech she gave about what it’s like to live with MPS 1, which is also known as Hurler Syndrome. Tonight I’m going to be talking a little bit about what it’s like being her big sister. Forgive me though, I’m in no way a professional speaker and I’ve never done anything like this before. So I guess to start at the beginning… I was five when Jessica was born. For the first few months of her life my parents and I were in a state of blissful ignorance. I was thrilled to have a baby sister and everything seemed completely normal. But that’s the thing, what is normal? See, even once things changed and Jessica was diagnosed with MPS, everything still seemed normal. Jessica is my only sibling so I have no other basis to go off of when thinking about what is normal for an average family to go through. For me; when Jessica had her bone marrow transplant and there was a 30% chance of her not making it; when it was predicted that she wouldn’t live past ten; when she goes into the operating room time after time, with no guarantee that she’ll make it out; when I see her physically and emotionally struggling every day, this is normal. It’s all I’ve ever known.

Jessica speaking at the 2017 RARE Gala

MPS affects Jessica physically, in many ways. She has deformed bones and joints throughout her body, eyes with cloudy corneas, which before her corneal transplant made her legally blind, and she must wear hearing aids in both ears just to have a muffled sense of sound. But cognitively she functions like any other child her age. I cannot possibly imagine the frustration this must cause her. MPS is like a wall that she is stuck behind, physically holding her back and to watch her endless struggle to break through an unbreakable barrier is heartbreaking. Jessica’s bravery and determination knows no bounds. She may be my little sister but I look up to her in many ways. With everything that she has had to go through I often feel guilty. Why did I win the genetic lottery and not her? Unfair doesn’t begin to describe this situation. As an older sister I want to be a role model, someone Jessica can look up to. However the guilt comes in when she sees me doing things like dancing on pointe or having the dexterity to play piano. I know that she so desperately wants to do things like this, to be like all the other kids her age, to run and play sports, to be limitless and to fit in. But she will never be able to because her body holds her back. There is currently no cure for MPS1and it is something that Jessica will have to suffer with for the rest of her life. 

Jessica, MPS has put you and our family through hell and back time and time again. But I want you to know that although MPS is something that you have, it does not define the intelligent, hilarious and fantastic person you are. No matter what happens in the future know that I will always be there for you, marvelling at your bravery and strength. I will never be able to understand what it’s like to live with MPS but I know what it is like to have parts of someone you love taken away by it. Please open your hearts and your wallets and donate to the MPS society. Your contributions are not going to a faceless charity, they are helping my sister and other families like mine to live a little bit more of a normal life. Thank you so much, enjoy the rest of the night.