SPOTLIGHT INTERVIEW…
Had you heard of CCHS when Mila was diagnosed?
No and none of the associated conditions which Mila has been diagnosed with which includes Hirschsprung’s Disease a bowel condition that causes severe inflammation and constipation and Hyper Insulinism which affects the body’s blood sugar levels..
How has the family faced the challenge of having a child diagnosed with this rare condition?
The journey has been extremely tough and one that I don’t think we will ever fully recover from even though we have accepted it. We have spent a lot of time researching and learning about the condition but more importantly, how Mila’s CCHS is presenting. Currently there is no known equivalent de novo mutation known in the world.
We have tried to separate Mila’s clinical care from Mila ‘our daughter’ as we do not want this condition to define who she is, even though it impacts all our lives daily.
At times, it has been a very lonely and painful challenge to endure as parents to see your child having to suffer such difficulties; but we would do and will do anything for our little girl. Sometimes it’s hard to remember that even though we are a small family unit, our wider family is also hurting too. Our friends and family were always going to shower Mila with love, but we can tell that there is an extra depth to the love and affection they show to Mila after all she is going through.
How is Mila doing today?
Mila has been going from strength to strength. We continue to navigate difficulties associated with her Hirschsprung’s diagnosis. After having half her large bowel removed, she still ends up in discomfort on a daily basis. Despite the 14 months she spent in hospital and the 14 major surgeries and procedures she has undertaken, it has not dented her funny, bubbly and independent personality. I don’t know where we would be if she wasn’t such a resilient little girl with the power to light up a room with laughter.
What are your hopes for her in the future?
We hope, like all CCHS parents, that one day there will be a cure for the condition. Short of this, some form of treatment which will allow her to live with independence and be able to sleep unaided. We can already tell that she will be a determined yet sensitive little girl and just hope that she is able to do and accomplish everything she wants to do. Despite the seriousness of the condition, we have promised Mila that we will do everything in our power to enable her to do, experience and succeed in anything she wants.
What is your current role within the NHS?
I work as an Engagement & Communications manager in an independent charity which supports a group of NHS Hospitals. In my current role, I oversee all the charitable activity at a large community hospital in North London, whilst supporting the wider teams across the other sites.
What type of support and expertise do you hope to bring to Keep Me Breathing as the newest member of its advisory board?
With a background in education, education fundraising and now NHS Charities, I hope to support Keep Me Breathing with innovative ways of raising money to fund development and research for treatments of CCHS.
Alongside this, I hope that my experience in the communication field will help amplify the awareness of CCHS and the work Keep Me Breathing is doing to tackle such a rare condition. Both of which I hope will help the charity reach its goal to change and save the lives of CCHS patients.
And finally….do you have any passions or hobbies that we should know about!
I enjoy watching sports as my playing days are slowly becoming a thing of the past! In my free time (when I’m not playing with Mila or recovering from her tiring me out), I enjoy a good TV series or some gaming.
