Help Millie get home!

Millie’s story started in April 2021 when she had her first seizure! By June Millie had an EEG which confirmed she had epilepsy and was started on anti-seizure medication. Millie became very unbalanced on her feet and was constantly getting headaches; for 3 months I was begging the doctors to give her an MRI and change her medication.

Millie finally had an MRI at beginning of December; being awake for an MRI as a 5 year old girl, was very scary and they couldn’t get very clear pictures! However, we got the results and they found a growth on her brain but weren't sure what it was. This meant they will have to do the MRI again under general!

In January 2022 Millie had her 2nd MRI. A few weeks later we got the results that the growth they had found, was inflammation which had reduced in size and the doctor was happy with that. They even advised that after another month it would be gone fully!

April 2022, a year after her first seizure and we were back in hospital; half of Millie’s brain had stopped working properly! We had an emergency EEG which confirmed this, they also completed an emergency MRI and lumber puncture! The MRI had shown that the inflammation was back again at full size! Millie had high doses of anti-seizure medication and steroids to treat the inflammation and thankfully was back to her normal self again soon after. She spent 2 weeks in hospital, then we were sent home with more anti-seizure medication. By this time Millie was on 3 anti-seizure medications! Millie continued having seizures and medication was being tweaked as she was reviewed.

September 2022 Millie had a seizure lasting 1 hour which was terminated by intubation. Millie had another MRI and lumber puncture, which showed that the inflammation had gone but had left scarring on the brain! Millie spent a week in hospital and again had bounced back to her normal self, so her medication was changed and we were sent home!

October 2022 Millie's seizures continued to get worse so again she was admitted to hospital for her 5th MRI and lumber puncture. The results were still the same as previously, so once again she was given more medication and we were sent home after a week!

Millie will need an operation to remove the scarring from her brain, but there is a long waiting list so I’m looking into going private, which unfortunately will cost a lot of money.

Millie is now 6 years old and just wants to live a normal life and so far this month she has had 13 seizures which is not great! We just want Millie healthy and happy and hopefully with your generosity, any donation is greatly, greatly appreciated. We thank you for your support and donations.

UPDATE

Millie has been diagnosed with Rasmussen encephalitis! A rare Eplipsy disease where inflammation attacks one side of the brain. Millie is now 7 years old and has had a hemispherectomy (half of her brain disconnected!) 

After 16 hours in surgery, Millie’s lung collapsed and she was put back on intubation where Millie spent a further week on picu and recovered well from her surgery! 

After the hemispherectomy, millie couldn’t move her whole right side of body and is still working hard in rehab for movements to return. 

Doctors have told us they will start to have discharge meetings with appropriate care team to ensure that Millie is safe to leave the hospital when the time is right! 

Council have agreed if a house doesn’t come available that is suitable for Millie’s needs within 18 months then they will start a extension on my property, Millie can not wait 18 months! 

I will be using money collected so far and any further donations to help adjust the housing situation and getting everything ready for when Millie can come home. As a family we thank each and everyone of you for all your support.