I am writing to you after my emotions have been triggered after watching a film called “ Brain on Fire” . The film is based on Susannah Cahalan’s memoir , in her words ” My month of madness “. Susannah was so close to being committed to a psychiatric ward where by could possibly of died of this rare brain disorder.
If it wasn’t for the skills of the Syrian-American Specialist Souhel Najjar. He saw there was something behind her problems that needed looking at. He never gave in , unlike the Limited general doctors. I really wouldn’t mind reading the book. “Brain on Fire.”
This brings me to my Sister and her journey. It’s a story that she’s unable to tell you. I can’t even begin to tell how my sister feels. All I can do is give my side of the story growing up with my sister and her very rare blood disorder.
Even her disorder I really don’t know everything about it. I know her protein count in her blood 🩸 is higher than anyone else’s who hasn’t the disorder.
I can say is PKU is caused by a defect gene that helps create the enzyme needed to breakdown Phenylalanine.
Without the enzyme necessary to process phenylalanine, a dangerous buildup can develop when an adult or baby eats foods that contain protein, aspartame which is an artificial sweetener.
My sister being LATE DIAGNOSED PKU at Twelve months old .
Yes indeed. The doctors at our local hospital in Southport didn’t have a clue what’s was wrong with my sister’s late development . 🌈There were signs of my sister being all floppy and not sitting up properly. I guess a Mum knows when there’s something wrong with her child. My Mum certainly guessed right on this one . 🌈 At the time the only hospital open in Southport was the old infirmary at Pilkington Road.
In the 1960’s this condition was virtually unheard of . All the doctors use to say to my mum and dad was ‘ your just being an over anxious mother’. This didn’t help the situation and by this time the damage was done. Her little brain had been damaged through being fed milk as an infant. Milk being high in protein, this damaged Louise 😞🤨.
My Sister was born in a private hospital in Crosby, a district of Liverpool. Park House was run by Nuns. My Mum opted for this hospital after loosing a child Once before. I can only surmise they didn’t do the Guthrie Test. Were by they heel prick the child to test the blood.🌈Just to say , I was born there too , two years later🌈 It was so that approximately one year after into my sisters life my parents got the diagnosis by a brilliant Private Doctor in Liverpool whom they went to see privately . They and we as a family regularly visit his clinics at Alder Hey Children’s Hospital.
Up until this year my sister had been visiting the specialist unit at Salford Royal Hospital who deal with adults of late diagnosed PKU patient’s. Now that is a grand hospital if I ever did see one. But through Louises inability to move around with ease we as a family decided not to visit Salford this year and in any case this coronavirus has hit the world since then and that sort of movement has been halted anyway.
🌈I can remember my sister having finger prick tests quite regularly at home but not sure how regular. Mum use to put a little droplet of blood 🩸 on a card and presume she use send to the doctors. Louise my sister got so use to going to hospital, she liked it in the end and to be honest still would if she could move with ease. 🌈
So living with my sister was different, she had many convulsions as a young girl. Together with her mental disabilities. My mum had a pin her down and make sure she wasn’t to swallow her tongue. My view of them days , were Louise was pretty wild. She would run away every day if she could. Even climb out of the kitchen window of the early hours. I remember myself doing this too. Don’t ask why. It just happened.
There was a time when we thought Louise had run off somewhere. My mum asked me to ask at George and Mary’s the neighbours next door but couldn’t get an answer. So went further a field to all our known play areas and streets we use to play in . Louise was nowhere to be seen. Only an angry dog . Yes I remember it so well. The little bugger bit me on my leg , it drew blood . It bloody hurt and Off I went to Hospital job. I think my Auntie took me. Louise was found and indeed she was at my neighbours house 🏠. I was bewildered. Yes not a nice memory. I guess it wasn’t a run of the mill childhood .
Whats your story of your glorious childhood. What sort of adventures do you recall ?. Was there a good story to tell ? 💖.
Now Louise lives in a care home and has done for just a year now. I remember the manager of the home coming to visit Louise and us as a family. Ooow.. she sounded ever so positive and caring. She chatted about all the stuff they do with the residents. Taking them out places. All the activities they promised, oh gee promises promises! . Some activities might of happened but getting a conversation out of Louise these days is no easy task . Now Louise’s inability to move with ease has diminished terribly. Her mobility has gone downhill with lack of movement. They said they’d sort a wheelchair out for her. If they don’t , I will.
It’s sad to see ..I’m not knocking their ability to care for Louise because this is brilliant. So this counts for everything. The staff are brilliant 🌟💖. The staff really like Louise as she’s no trouble at all. It’s a god dam shame Louise has this problem , as she was born flipping as normal as anyone else , apart from having a defect gene . Which could of been sorted at birth or shortly after.
🌟I can remember a good time in Louise’s life were by she started to learn at a private school in Ainsdale called “ MountWood School “. I can remember her being able to write and learn her times tables. Blinking FANTASTIC.
Louise use to be a smiley child , how times and life changes one. Mind you she’s just lost her life long companion Richard, so this will have an impact on her. The big C got him in the end . He was diagnosed too late I think.
Now living with a child with ADHD , Gosh ! . I feel I need educating on how to live with this in my household.Its certainly challenging . It certainly makes one think … gee , well it’s testing to say the least 💥.
Lots of love to everyone who has read this 😄🌟💛.
Take care in these uncertain times .
Heck I was going to say Hug your best friend because you can , but are we allowed too ?😄🌟🤷🏼♂️
Do the best you can
Virtual Hugs from me 🤗🤗🤗.
Edited etc 🌈. Time and date