This week´s blog is a truly personal story, and one which is incredibly important to all of us at Charlotte´s Web, and in particular to Charlotte herself. We began a special offer to our customers this week, donating £5 from each sale of our Celestial Moon Ring, one of our best selling pieces, to support a fundraising page for an exceptional boy named Rupert. In this blog, we would like to give our readers and customers a personal insight into why we believe this to be such a relevant and worthwhile cause.
Rupert is the son of Siobhan and Paul, Siobhan being one of Charlotte’s oldest friends, having met and created a special friendship with each other at the age of ten, they shared many experiences, life events and laughter over the years, and some personal struggles along the way. Siobhan is an exceptionally intelligent woman, having studied Arabic at Cambridge University, and later in Syria, going on to work as an international Middle Eastern analyst.
This stellar career was cut untimely short however, when in her early twenties, she began to feel unwell, and was ultimately diagnosed with a crippling case of ME. Charlotte herself spent much time personally caring for her during her darkest days, taking their friendship to an even deeper level, whilst she battled this complicated and often misunderstood condition, leaving her unable to work for several years.
During a period when her ME was less severe, she met Paul, and after something of a whirlwind romance, they married, and Siobhan soon became pregnant with identical twin boys. However their happiness at this initial joyous news was horribly short-lived, Siobhan suffered a difficult pregnancy, and they discovered that at 22 weeks, George, Rupert’s twin had tragically passed away in utero, hence causing a period of oxygen deprivation for Rupert, who also suffered a bleed on the brain.
Rupert was born at just under 24 weeks, and needed emergency care, spending 142 long days in the neonatal intensive care unit (NICU) before being transferred to his local special care baby unit. Weighing a tiny 1lb 8oz at birth, his weight dropped even lower, and he bravely battled through endless invasive and testing procedures to save his precious life.
Rupert was diagnosed with quadriplegic cerebral palsy (CP) with dystonia, which is the most severe form of cerebral palsy. He takes epilepsy medication and is at risk of seizures. Rupert also suffers from chronic lung disease, making him highly susceptible to the slightest cold or cough. Despite all of this, Rupert is a fighter, a survivor, with beautiful blue eyes which enchant everyone who meets him. Whilst Siobhan and Paul are lucky to have each other, and be surrounded by an incredibly supportive network of friends and family, Siobhan still battles her own illness, and perhaps, most frustratingly, so much is unknown to them, and all who love Rupert about his future. He may never be able to carry out the most basic of motor functions, or walk or talk, no one yet knows.
We are sure that Rupert´s story will move you as it does everyone who reads it, therefore, should you wish to assist Rupert and his parents by donating to his page then rest assured that every single penny will help and will be spent wisely on treatments, support and other resources that Rupert cannot access through the NHS.
For more information, or to make your donation, visit www.iamrupert.co.uk.