Phoenix suffered seizures in the NICU so at less then 24hrs old he was taken to the prestigious Sant Juan de Deu children's hospital in Barcelona (where he lives) for an MRI scan of his brain.
It was at this point they discovered he had suffered a perinatal stroke, effectively a blood clot in his brain, causing extensive bilateral brain injury. It was then that my sister and her family's lives were turned upside down.
Pea (as we like to call him) also had a gaping wound on his right arm that went down to the bone threatening amputation. Luckily the arm has been rescued by a dermatologist, plastic surgeon and ulcer specialist, but it hasn't exactly been a smooth ride since.
Pea has been having a mix of physio twice a week, aguatherapy (when he was old enough) and all the extras my sister could afford at the time which was acupuncture and craneal osteopathy.
Just after Christmas, Pea began having frequent and serious seizures. My sister and her family have been living in the hospital with him since the new year which is depressing enough in itself. He has a team of neurosurgeons working with him, and has had the maximum dose of anti seizure meds. Unfortunately these haven't worked for poor little Pea, and he is now having a course of aggressive steroid injections which are also currently on their maximum dose and at the moment, the seizures aren't showing signs of decreasing.
I love my family and it's absolutely rubbish being completely powerless to help them in their current situation. The only possible thing I can think of to do which might be helpful is to raise some money for them to help alleviate some of the surrounding concerns.
Basically, to break it down, having a very sick baby is not only extremely emotionally traumatic, but financially crippling. Costs incurred include transport to and from the hospital daily for my sister's husband and my mother, complimentary therapies, child care for their other son Raphi when they can't adhere to the school timetable, living in the hospital is €40/day per person just to eat, bedding, towels etc, and obviously my sister can't go back to work. She gets a percentage of her usual salary but its not enough to pay the rent and bills.
In the future, Pea will need specially designed (super sized!) push chair and orthopedic equipment when the time comes as well as other therapies which aren't covered in the Spanish system.
If there is ANY WAY that together we can make a small contribution to making their lives easier at the moment, I'd like to try and help and I know that we're lucky enough to have an army of excellent friends who will show some support.
I have run two HALF marathons before in my life, and both times sworn never to try and do them again.
So, with this in mind, I've decided to tackle 2 FULL marathons in 2 days along the South Downs in late June. For those of you who don't know, that's 52.4 miles or 84.3 km about the same as London to Brighton. I have some amazing friends who have volunteered to take on each day with me including Tina Bartels and others TBC.
I will be thinking up a number of fundraising events in the interim to try and generate some support, so ideas welcome, but in the meantime, if anyone can show their support by donating to this page, we'd be so so grateful and huge love and thanks to everyone who has been so incredibly supportive to my sister and her family so far. We're truly lucky to have you all in our lives. xxxxxxxxxThe Bedford and Guix family xxxxxxxxxxx