Life saving medical treatments for Connie

Help us raise money so that Connie can receive vital treatment to stop her immune system attacking her body.

For over a 18 months she hasn't been able to swallow properly and since July 2023 has been paralysed. She has terrible seizures lasting over an hour. The beginning of this started over 4 years ago, when she was 12.

Connie has been diagnosed with PANDAS syndrome. (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcus). This is when the immune system causes inflammation which attacks the brain. Small proteins are produced as an inflammatory response which latch onto the brain cells causing them to not function. This has led to Connie to have lock jaw, inability to swallow and paralysis.

In addition to this, she has POTS (postural orthostatic tachycardia syndrome). This makes her heart beat too fast or suddenly slow down, resulting in her fainting. During one of her fainting spells she hit her head and knocked herself unconscious.

This condition has become life threatening. She could choke during a seizure and it is impossible to intubate her as her jaw is clamped shut. Connie is also in constant pain all over her body. Her jaw is always in spasm giving her a constant migraine.

Her private PANDAS specialist advised Connie to get treatment so that she has a chance of living a full life. However, before we do that we have to get her jaw open and get her swallowing again so she can improve her nutrition.

Before she became critically ill, Connie was a 15 year old full of life. She enjoyed sports, rock climbing, trapeze and silks, dancing, music and youth clubs. She was always involved in school activities with a passion for drama and an interest in environmental activities. She was chosen to represent the school as a changemaker for sustainability in education. Connie's dedication towards helping others is undoubted.

COVID changed everything. Connie developed tics, seizures and muscle locks, causing her great pain. Her jaw and mouth muscles locked, giving her dysphagia (the inability to swallow). After being on feeding tube for over a year, her health has deteriorated with the lack of normal food and nutrients entering her body. She is not tolerating her soya feed so well and her body at times rejects it, making her sick. This means she doesn't always have the prescribed amount to keep her body functioning well. As a result, she has big seizures and ends up in hospital to be stabilised. She cannot have feed down her tube during a seizure. Every time this happens she loses weight and becomes weaker and weaker.

With her immune system at an all time low, a simple infection could lead to even more deterioration.

So we plea with everyone reading this to donate to Connie's life-saving fund so we can help her live a full life again, leading the life of a well 17 year old. She needs this now more than ever to give her a chance at making a recovery.

Your donations will assist with the costs of specialised medical treatment for her rare PANDAS syndrome and all the other issues which have developed from it. This will include neuro physio therapy to help her open her jaw and learn to swallow again and to help her get back on her feet and walk again. If it is appropriate, treatment with IVIG for PANDAS. However, full diagnostics have to be done before that decision is made.

Thank you kindly.

Connie & all her family and friends.