On the 29th January 2018, Grace Beverton, who at the time was just 5 & ½ months old, suffered a full tonic clonic seizure at home in her cot.
The following months consisted of various tests and, unfortunately, more seizures. It wouldn’t be until July when Grace was diagnosed with the extremely rare mutation of the gene RHOBTB2. A condition that only 30 people have worldwide.
With the Bevertons on a mission to find out more about Grace’s condition, they set up the charity Hope for Grace and CommunityAd caught up with Grace’s dad Dale to find out more…
Can you tell readers what made you start up the Hope for Grace Charity?
We set up Hope for Grace under the umbrella of Tree of Hope so we have a registered charity number. This enables us to raise money to pay for private physio sessions and equipment that will help Grace live a more fulfilled life.
Can you explain to readers just how difficult it must be seeing your daughter battle RHOBTB2 every day?
Being Grace’s parents has never been easy and to watch my daughter struggle through large amounts of pain on a daily basis is heart-breaking. When Grace had her first seizure at 5 months old, I would have done anything as Grace’s dad to take that away from her. Grace’s current battle is her movement disorders which causes her to have full body cramps (this is called dystonia).
This is especially hard to see as Grace screams in pain and sadly there isn’t much that we are able to do to help other than comfort her through the pain. Her other movement disorder is called chorea which gives Grace uncontrollable dance like movements. Grace currently takes five different medications per day, twice a day to maintain her condition.
Otherwise we choose to be positive and see Grace’s condition as an adventure that has led us to meet some new and amazing people.
From birth, Grace has had to battle through this, as her father can you tell us just how inspirational Grace is and what you are most proud of about her?
Grace is truly my blue-eyed girl and a real Daddy’s princess. Grace not only inspires me to be a better person but also others around her and I find this so touching. Grace’s smile is enough to warm the coldest of hearts and lights up the room. I’m proud to be her father and her determination, lust for life and love she shows is inspirational. I wish it was as simple as saying one thing I’m proud of but with everything she has been through in such a short time on this earth I’m proud that she is just my little girl and she continues to be amazing and surprise us all.
How has Grace found the last few months during the pandemic and has it affected any hospital appointments?
Grace has sadly had to have all of her therapies stopped as well as hospital appointments.
This has not been easy for Grace as she loves her therapists and always tries so hard at each session. We have tried our hardest as her parents to do this at home to keep Grace active and motivated but I think she is bored of mum (and dad now ha ha) as she enjoys the social interaction side as well.
Grace has had surgery on her hip due to her condition and attended Great Ormond Street regularly to be checked. We believe that Grace potentially will require more surgery and due to the pandemic Grace’s appointment have been postponed. We understand this is the right thing for her consultant to do but is worrying for us as parents.
With the easing of lockdown rules, are there any upcoming fundraisers taking place for Grace this year that you can tell us about?
At this time, most of Grace’s fundraising events have either been cancelled or postponed due to the pandemic which has really hit us hard with raising money but it was the right and safe thing to do.
We hope that we are able to put on a few events as and when it’s safe to do so, such as our annual charity Ball Held at Marks Tey Hotel and our Lion Fest Music Festival which was due to be held at The Crown Pub in Wormingford this year, and we had some amazing bands and stalls who intended to support us. So, watch this space and of course if anyone reading would like to help us please get in touch via our Facebook page “Hope for Grace”.
To those who may not have internet access but would like to donate, what would be the best method?
We would request that you call the Tree of Hope and request to make a donation to Grace’s campaign on 01892 535525 (8am-9pm) or please send a cheque in the post to Tree of Hope and they will place funds into Grace’s account (the cheque must be written to Tree of Hope and then write Grace Beverton on the back of the cheque):
Tree of Hope, Salford House, Salford Terrace,19-21 Quarry Hill Road, Tonbridge, TN9 2RN.
We are so grateful for any donations no matter how big or small and they really do mean the world to us. We normally try to provide an event or raffle to raise money rather than just ask but during these difficult times this isn’t possible.
What is your reaction to how the community have helped donate and fundraise with their own events in order to help raise money for Grace?
No matter how big or small community fundraisers are I’m always blown away by the support and that someone has decided to help and support our little Grace. We are also so thankful for the children that fundraise for Grace and find this so rewarding.
We will always try as hard as we can to help anyone that is raising money for Grace whether that be by providing running tops or charity pots etc., we are always on hand to try and help and do our bit, but we are only a small family team so please bear with us. In short, anyone fundraising for Grace are heroes in our eyes and words cannot express our gratitude to them.
There is not much medical literature available on Grace’s extremely rare mutation of the gene RHOBTB2, have you received any possible updates from medical professionals on whether there may be new science to help?
At this time there isn’t much known about Grace’s condition but more children and young adults are being diagnosed. Currently there are around 30 in the world. Our hope and wish is that the more we spread and raise awareness the more we may help other families that are living with Grace’s condition or maybe help get a diagnosis.
At this time Grace’s condition can only be treated with medication and due to it being genetic there are no other methods known at this time, but we don’t know what the future holds.
Through your fundraiser, you have been able to raise an incredible amount of money for Grace, what is the short- and long-term vision that you have as a family for Grace?
We have worked extremely hard to raise the amount of money we have for Grace and it hasn’t always been easy. As a family we have made many sacrifices but Grace is worth it and we put her needs before our own. My wish is to achieve an amount of money that keeps Grace able to have therapies etc throughout her life to make it as easy and enjoyable for her as possible.
My long-term dream would absolutely be to try and help other children, sadly working full time and trying to juggle this I’m not sure how it could be done, but big things have little beginnings so maybe in the future this is a reality.
To donate, visit the Tree of Hope website.