Jennifer’s Fundraising Story

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The most important thing that I have learned from life so far is that we should not just exist or survive, but grow, conquer, experience and achieve. The only way I’ve found to do this is to surround yourself with the people that make you your best self, support you, protect you and make you flourish. This is something we teach our children every day and this is something that makes us so very grateful for the ‘village’ we have, especially since our youngest son, Jonah, has a medical condition.

Our ‘village’ is not just made up of family and friends. It is the professionals who have worked alongside Jonah since his first breath, who have guided us in parenting a medical child at a very vulnerable time (Lockdown 2020).  It is the locals who show support in so many ways, helping Jonah to feel accepted within our community and engaging in all of our fundraisers. It’s our fantastic friends and family who step in without being asked when Jonah has his hospital admissions and our family splits in two. It is our oldest son’s school, who have supported him during his brother’s hospitalisations, when his routine gets disrupted and he has to see his brother endure pain. It is the charities which we fundraise for that provide equipment to help life become more accessible and allow people like Jonah to have opportunities to connect with others who live the life that he lives – a life with O.I.

The reality is that when you have such a rare condition there are not a mass of charities who support it and therefore there isn’t a lot of help out there for families like us. Awareness is key- and that’s where The Brittle Bone Society have stepped up and become a huge part of our lives. They give us the confidence to be the advocates we have to be for our children.

O.I. (Osteogenesis Imperfecta), also know as Brittle Bone disease, is a rare condition caused by a mutation of the COL1A1 gene (in Jonah’s case). This means that his body either has a collagen deficiency or the collagen he does have isn’t doing it’s job properly.

Here’s a peek inside our bones showing how the collagen should look in a healthy bone and how it looks for people with Brittle Bones. They are much less dense (See graphic below).

Jonah’s symptoms and characteristics , so far;

  • shorter long bones (limbs)
  • frequent and unexplained bone fractures from little or no impact
  • fracturing in the womb
  • bone deformities and bowing
  • blue sclera (the whites of your eyes)
  • bruising easily
  • short stature
  • triangular face shape and macrocephaly (larger skull)
  • barrell chest
  • muscle fatigue & bone pain
  • loose joints and hypermobility
  • Dentinogenesis Imperfecta (Brittle teeth)

Now, let’s move away from the facts and jump into daily life for us. We live life like everyone else does, just with adaptations!

This means equipment, home adaptations, clothing alterations, changing the way we handle Jonah, allowing for rests in-between tasks and always factoring in our emotional health. Being kind to ourselves, being resilient, inviting humour wherever we can, having courage and being proud of the individuals we are.

We could not do this life without the support of our favourite charity, The BBS. They are part of our journey, they provide equipment for us, support us, provide Jonah’s nursery/school with factsheets to educate them on O.I. and arrange events and trips to encourage us to experience life and connect with others at annual conferences and fun days!

We now pledge to do annual fundraisers for the BBS to say thanks to them for investing in the future of O.I. Warriors. Our annual fundraisers have always been important to us. We always choose to do something that challenges us and pushes us to our limits. We have Jonah in mind throughout the training process and the actual event as he is our motivation.

We believe that if people with medical conditions like this can push through their struggles and climb metaphorical mountains every day, then we can climb the real ones for them. If they can jump the hurdles that life throws at them, then we can too. If they have to learn to walk over and over again after each surgery or fracture, then we can run a marathon on their behalf. And most importantly, because every one loves cake, we can’t forget a good old coffee and cake morning fundraiser so we can spend time with our community who help so many people by donating to the BBS.

Our family & friends’ fundraising events so far have been school bake sales, ‘Wear yellow for Wishbone Day’ at school, ‘The Yorkshire Three Peaks’, The Great North Run, Scafel Pike, Binnian Slieve, Tough Mudder and organised fundraisers through our workplaces too. We have collectively raised over £5000 so far and we are so grateful for the generosity and commitment from everyone.

We have decided this year’s fundraiser will be climbing Scafell Pike; the highest mountain in England and one of The National Three Peaks.

Let the training commence – it’s all for you, Jonah, and all of the O.I. Warriors.

If you wish to donate, please follow the link to our just giving page below;

www.justgiving.com/page/jonahsjourney2024

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