Running for Brittle BonesRebecca & Rob van Berkel
It took almost a year for us to get Lucy's diagnosis of Osteogeneis Imperfecta (OI, or Brittle Bones). We had a baby who fractured for no apparent reason, what was going on? Because there are just 1 in 15,000 children born in the Netherlands per year with this rare disease, there is very little known about it. There are many different types of OI, from the most severe, where babies can die within days of being born, to the lightest form, which Lucy has. Lucy does not let OI stand in her way. She has had around 30 fractures in her 14 years, and as much as we might try, there is absolutely no holding her down! She loves to cycle, run, jump on trampolines, rollerskate, play volleyball, push boys in the playground – most of which have lead to fractures in the past, but she lives her life to the full.
Her ongoing positivity and energy is an inspiration to us. If I ask her to be careful (which happens a LOT!) she will give me her smile and tell me to “heb vertrouwen” – (to trust, to have confidence and faith in). So, we have “vertrouwen” that we will complete this run! For Lucy, for everyone with OI, to raise awareness and much needed funds to help improve the quality of their lives.
Lots of love,
Rebecca & Rob