Girls take on challenge for life-saving charity
Despite having minimal movement in one side of their bodies, Caity Downs, 19, and Angelina Mills, 11, from Gresham in Norfolk decided to walk 198 miles (the distance between their homes) over ten weeks, to raise funds for Sturge Weber UK, the charity that’s been there for them since they were babies.
Sturge Weber Syndrome means abnormal blood vessels form in early development, causing a port wine stain on one side of the face, and in some cases, severe epileptic fits that require removal of brain tissue.
Both girls suffer from developmental delays, social and behavioural deficits, hemianopia (vision loss in one side of the eyes) and autism. On their ‘weak’ side, they have no mobility in either their hand or ankle.
Despite all of the above, when lockdown kicked in, the girls’ summer plans evaporated, but instead of feeling bored, they set themselves this challenge to stay positive, keep moving, raise awareness about their condition, and raise urgently needed funds.
Caity’s attitude is, “I can do this, I will do this,” and despite their disabilities, the girls have beaten their fund-raising target of £1,250 to raise £6,001 so far.
Lisa Massingham, Angelina's mother, said: "I’m so proud that both girls are raising money for the charity that has helped them through their childhood years. I don’t know what we would have done without its support.”
The girls and their mothers have been recording their progress via their Just Giving page, and tracking their distances via the app, Map My Walk.
Paula Harman, Caity’s mother, added, “Anything is possible. We want to raise money for the charity and raise awareness about SWS across the UK. The charity lost a lot of funding due to COVID, yet we all need its support now more than ever.”
It recently emerged that care centres for people with learning disabilities are open at just 10 per cent capacity due to the effects of COVID (3). Charities, families and carers urge the public for support.
As toddlers, both girls underwent functional hemispherectomy surgery to disconnect one side of their brain, due to the severity of their seizures: Caity was having over 100 seizures a day before her surgery aged 16 months, whilst Angelina suffered two to three seizures a day until her surgery aged 13 months. The surgery left each girl with half a brain, and weakness (hemiplegia) on the opposite side of their body to that from which brain tissue was removed. The girls had different sides of their brains removed, meaning they have different tendencies and personalities. (The left side of the brain is generally for methodical, analytical thinking. The right side of the brain controls more creative and artistic traits.) People such as Angelina, who only have their left hemisphere, struggle to understand emotions, and often have sensory issues. Despite these differences, the girls are firm friends, and have encouraged one another through their challenge.
A long-distance challenge is difficult for a healthy child, let alone those like Angelina and Caity, who have limited mobility and find lack of routine extremely difficult.
Yet, Paula Harman said:, “They just need to try a bit harder than most people. Like anything, you work hard for it and you get it - that’s what I’ve always told my children.”
Lisa Massingham echoes the sentiment that, ‘What you put in, you get out.’ The girls met through the charity’s social events 10 years ago. In December 2018, Angelina had tendon transfer surgery to correct her foot position caused by the Hemiplegia and relied on a wheelchair for 4 months afterwards. She was unable to walk or bear weight on her leg leading up to the surgery, yet she has chosen to embark on this sometimes-painful challenge.
Jenny Denham, the chair of Sturge Weber UK for 25 years, describes the impact of SWS on patients and their families, “Living with SWS is a struggle for most families, it is really difficult at the start when you do not know where to go for support. We set up the charity to support families with SWS and provide a community. We are incredibly proud of Caity and Angelina who continue to inspire families that might be considering surgery for their youngsters.”
Lisa Massingham notes, “Angelina’s brother, Luca, asked if she was going to die. I had to stay strong and tell him everything was going to be okay. When the boys were growing up, they watched a documentary which featured their sister, called, ‘Inside the Human Body’. It mentioned that SWS was life-threatening. Having watched this, Luca knew it was very serious.”
Paula Harman adds, “Caity’s siblings were brilliant - we were really honest with them. They knew where the emergency medication was, in case of a seizure.”
Lisa encourages fellow parents: “Don’t feel like you are alone, help and support is out there. Also, remember that your child’s abilities actually outweigh their disabilities!”
Sturge-Weber syndrome (SWS) is a rare condition that occurs in between 1 in 20,000 to 1 in 50,000 live births. The syndrome comprises a birthmark, named a ‘port wine’ stain, usually on one side of the face. The ‘port wine’ stain involves abnormal blood vessels on the surface of the brain, which usually result in epileptic seizures. (Other life-threatening issues may also occur in extreme cases.) These abnormal blood vessels occur most commonly on the occipital lobe (back area of the brain) but can occur in other areas of the brain, and sometimes in rare circumstances, on both sides of the brain. The abnormality develops during pregnancy, most often in the first 3-4 months.
Brighton-based Neuropsychologist, Dr. Ashok Jansari, specialises in studying the impact of brain damage and has over 28 years’ experience in the field. Having heard the girls’ story, he wanted to learn more and help in any way he could, noting, “I see these two brave girls as ambassadors for others who have different forms of brain damage. We need to generate as much public awareness as possible to highlight what many people in society may be living with but have never talked about.”
On Tuesday, September 1 the girls completed the momentous final mile in Brighton and celebrated with a trip up the i360, before the end of the school holidays.
Local business owner, Karen Emanuel, (CEO of Key Production, based at 85 Gloucester Road, Brighton) was so warmed by the girls story that she has organised a treat for the girls up the British Airways i360 Viewing Point after their final mile.
She said:“The girls have inspired me to increase awareness for the charity, and let people know about Caity and Angelina’s brilliant story of ‘strength in adversity.’”