January 2021

Our year didn’t start off how we expected after what’s felt like a constant battle for answers as to why Penelope is constantly ill with “viral” illnesses that have become more and more frequent over the years to the point Penelope couldn’t get out of bed. I decided to take Penelope to the opticians as she complained of head ache all the time and visual disturbances where her eyes would black out for a couple of seconds and she would scream. We spent 2 hours at Penelope’s first eye appointment and was given a emergency referral 3 day later Penelope’s symptoms began to worsen and the eye clinic got her straight in. She had repeat eye test checking the back of her eyes. We was then told Penelope couldn’t go home she needed a MRI and had to go up to the children’s ward she then had to have blood test, nerve tests etc. Penelope’s MRI showed she had Bilateral papilledema (swollen nerves behind the eyes) caused by pressure on her brain. Penelope then underwent lumbar punctures to measure pressure and test fluid Penelope had to go through this a few time before we got answers. Penelope was then diagnosed with Idiopathic Intercranial Hypertension a rare condition which causes pressure on the brain Penelope was put on to medication that she takes twice a day to take the fluid down on her brain and reduce the chance of Penelope losing her eye sight. The pressure is causing damaging not only to the nerve of her eyes but has also caused one of her veins to narrow which sits under her brain. Penelope’s medication is being increased every two weeks until she’s at her maximum dose this has to be done slowly as it can make her feel ill and blood tests need to be taken to make sure Penelope’s salt levels in her blood are ok! At the minute Penelope is trying the first method of treatment which is medication and possibly frequent lumbar punctures as the only other thing they can do is brain surgery to put a shunt in! Penelope is now under 3 different consultants and is being regularly monitored. There is 10-30% chance of going into Remission.

We have decided to turn this negative into a positive and have teamed up with some family and friends to take on the challenge of the Yorkshire three peaks on the 26th of June and raise money for all those people who suffer with this condition that we had never even heard of till January there is only one uk charity for IIH who support family’s all over the uk. We want to do our bit to help as more research, support, effective treatment and one day a cue is needed. 

So please if you can donate or join us on our challenge it would be very much appreciated 💚💙

Thanks for taking the time to visit my JustGiving page.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving - they'll never sell them on or send unwanted emails. Once you donate, they'll send your money directly to the charity. So it's the most efficient way to donate - saving time and cutting costs for the charity.