Rare complexed medical Condition

Being a Parent myself of a Child with a very rare complexed medical Condition, the song lyrics below were written by Bob Dylan, mean a lot to me personally, I guess most Parents in my shoes could relate to the words also. My Daughters one of about 1400 known cases across the world when I wrote this page, 2017. Her body cannot convert sugar or carbs in the body to glucose meaning it then is not transported properly into the brain, leaving the brain starving for the energy which it needs to grow and function. So She lives on PURE Fat, any small amount of food has to be eaten with butter which out ways the sugar or carbs in food, 22 grams of apple means 18 grams of butter. There is no cure for Glut1 Deficiency. The standard of care treatment is a ketogenic diet, which helps improve most symptoms for most patients by giving the brain an alternate source of energy. She is Tube fed 200gms of this diet 3 times a day. The hardest thing we find is People don’t understand she cant eat food without the butter.

The GLUT-1 website link can be found near the bottom of this page, also on my website, the icon is a red heart. To understand more about a condition where you cant eat sugar or carbs and live on pure fat.

http://www.birth-defect.org/glut1-deficiency/#first-published-8-July-2016

This song means a lot to me

Make You Feel My Love
When the rain is blowing in your face
And the whole world is on your case,
I would offer you a warm embrace
To make you feel my love.

When the evening shadows and the stars appear
And there is no one there to dry your tears,
I could hold you for a million years
To make you feel my love.

I know you haven’t made your mind up yet
But I would never do you wrong.
I’ve known it from the moment that we met,
No doubt in my mind where you belong.

I’d go hungry, I’d go black and blue,
I’d go crawling down the avenue,
There’s nothing that I wouldn’t do
To make you feel my love.

The storms are raging on a rolling sea,
Down on the highway of regret.
The winds of change are blowing wild and free,
You ain’t seen nothing like me yet.

I did make you happy, make your dreams come true, 
There’s nothing that I would not do,
Go to the ends of the earth for you
To make you feel my love.
There’s nothing that I wouldn’t do
To make you feel my love.

Please Note the lady sitting on the left side near the end of this video clip of this song being sung by Adele herself

first letter

The Make-A-Wish Story

Watch the video on how Make-A-Wish was born

It all started with a single wish. Watch the amazing, true story of Make-A-Wish’s founding and how one community came together to bring a life-changing wish to life. 

Founded in Phoenix, Arizona in 1980, when a group of caring volunteers helped a young boy fulfill his dream of becoming a police officer, Make-A-Wish is one of the world’s leading children’s charities.

After the start of Make-A-Wish in the United States, interest in granting the wishes of children with life-threatening medical conditions quickly spread to other nations. In 1993, Make-A-Wish International was officially formed to serve five countries outside the U.S. – and now helps to serve children outside the United States in more than 50 countries on five continents through its 42 affiliates. Make-A-Wish America grants the wishes of children in the United States through its 62 chapters. With the help of generous donors and over 40,000 volunteers, Make-A-Wish has collectively granted approximately more than 415,000 wishes worldwide since 1980. 

Impacting children in more than 50 countries through our 42 offices worldwide.

https://worldwish.org/en/make-a-wish-story

button

 

Because of the people that came together to give my own daughter her Wish. Which was to see Katie Markham.

The outstanding Katie Markham (as featured on Graham Norton’s BBC Adele Special) Above Video, presents an immaculate celebration of one of our generation’s finest singer-songwriters. This enthralling concert faithfully recreates the magic of Adele’s three record-breaking albums and includes the smash-hits Chasing Pavements, Make You Feel My Love, Set Fire To The Rain, Someone Like You, Hello, Rolling In The Deep and the multi-million seller Skyfall, as well as a selection of songs by some of the legends that inspired her.

Theatre Royal in Brighton

On the 17th Jan 2018, Katie Markham was playing the Theatre Royal in Brighton and though make-a-wish we were able to meet Katie before the show.

katieintro to this building. This important grade II listed building is one of the oldest working theatres in the country with an exquisite example of a regency auditorium. With a collection of historic buildings that surround the stage house, it a fine example of a Theatre that has evolved over the last two hundred years.

meeting jo

Theatre in Brighton started in 1766 at Barn Hall in Brighthelmstone, a village soon to become Brighton. Theatregoers were to patronise two other buildings in the city before The Prince of Wales gave his Royal Assent for the building of a new Theatre Royal Brighton on its present site in the summer of 1806. The Theatre first opened its doors to the public on Saturday, June 27, 1807, with a performance of Hamlet and The Weather-Cock starring Charles Kemble of Drury Lane.

For the first 50 years, the Theatre suffered very mixed fortunes with no single manager lasting more than 18 months and with the risk of financial ruin never very far away. In 1854 an actor Henry John Nye Chart arrived, took over the management of the Theatre and turned its fortunes and reputation around. He embarked on an extensive expansion and renovation programme with renowned Theatre architect Charles James Phipps. As an actor, Nye Chart had been somewhat unremarkable however his success was to turn an insignificant and disreputable playhouse into a nationally respected institution and he was one of the great actor-managers of the late nineteenth century.

Meet the people in photo

Middle My Friend Setch (Stage Manager) happy

Left, Press Officer for the Theatre Royal

Right side, Make-A-Wish Lady, all her time is given free they don’t get paid.

scatch

 

 

 

When Nye Chart died in 1876, his wife Ellen Elizabeth Nye Chart took over the management; with considerable flair and imagination, she secured the Theatre’s national reputation as one of the most prestigious venues outside of London. She introduced the matinee and gave tickets for the annual Christmas pantomimes to inmates of the Workhouses. Her legacy was to be one of the first women theatre managers with pioneering audience development skills. By the end of the nineteenth-century Theatre Royal Brighton had established itself as The Actors Theatre where every major actor including the Kemble & Siddon Families, Sarah Bernhardt, Edmund Kean, David Garrick and Sir Henry Irving graced the stage.

view from box

Through the twentieth century, the Theatre grew in stature and national reputation. International playwright Ibsen premiered a UK production of The Doll’s House at the Theatre. Later Rattigan, Coward, and Orton plays opened as a try out date before a London West End run. The Redgrave Family, Lord Olivier, John Gielgud, Marlene Dietrich, Dame Margot Fonteyn, Rex Harrison, Dame Judy Dench and Paul Scofield are but a few of the stars who performed on the famous stage.

watching

Read more 

http://www.atgtickets.com/venues/theatre-royal-brighton/history/

Katie Markham

Katie Markham stage show Adele songbook

Over the past year since we took Josie to first see Katie Markham, I have come to know her, and when I asked Katie if she would do a Make-A-Wish for Jo her reply was, I have never been asked but yes would love to, Josie is mad on Adele loves her songs, we as Parents know everyone also lol and so do our neighbours, Jo doesn’t like noise, we live in a quiet house until the Adele songs come out. 

katie m

jo and katie

We got picked up in a white limo 45 feet long driven to the Theatre Royal, meet with the lady from Make-A-Wish, and the stage manager, who I had met before somewhere else. we were lead into the Theatre Royal, everyone we meet took the time to say hello to jo, she had no idea she would get to meet and spend time with Katie, her face when she saw Katie walk onto the stage for the sound check, was a picture something we as Parents will never forget. We were there on our own and the band and theatre staff were just lovely, Josie was taken ill as the excitement triggered one of the 5 movement disorders off,  but Katie was just the loveliest person that I have meet in a very long time, she gave a lot of time to us as did band, when the show later started (2hrs after we meet her) she still made eye contact with our Jo.

While we waited Make-A-Wish had arranged for us to go and eat, we went for a Pizza, with Josie. Easy I guess your thinking, well they knew we were coming, but bless them couldn’t understand that Josie cant eat food like Mum Nanny and Dad could. They were trying to make Josie feel special but after the movement, disorder kicked in we then as Parents are on high alert to keep our Child safe and well, feeding Josie none high-fat foods could of set it off again, and they can last up to 8hrs with no drugs, Doctors say for her it is like running a 25k marathon for her body. The restaurant could not understand why we could not feed her. They were trying their best and it was not their fault, it is just a very rare condition.                                                                                                     Josie was made up with her Adele Wig

adele wig

like the guy that once stepped over her on the floor in a major supermarket, saying can’t you control this child from throwing herself on the floor? My reply was short and very to the point. She is having a ************** SEIZURE mate, he replied sorry I thought it was a temper kids thing. Even if it was you stepped over her??

wig

Josie’s condition took 3 years for the Doctor’s to find, that meant having to go through these types of seizure, and as Parents having to watch knowing there was nothing we could do, when the metabolic team found it, to be told your child is one of a hundred children known in world, and she might never walk or talk, as they knew very little about it, was for me and my wife, heartbreaking and it would be life-changing beyond belief. Her condition is so very complexed it is mind-boggling hard to get one’s head around for us as Parents, so for people who just live the normal life it must be a shock. So as Parents we understand this.

While in the Pizza Shop Josie asked if Daddy could buy some Flowers for Katie to say thank you. She knows this because as a Family we do this when meeting Friends, so off we went to find some, we got some from a supermarket with a box of ROSES Chocolates, she then guarded these back flowersinto the theater, these were her’s and she wanted to give them to Katie. The photo is blurred as I was bumped into when taking it of Josie giving the items to her “friend Katie” 

In the background of this photo with long hair is one of Josie’s Specialist Nurses, who has known Josie from a baby, and who without people like her, our lives would be even harder, its people like her and the team that do their jobs for us as a family that we will never be able to thank enough. 

Josie’s Condition, Is Glut-1 Deficiency, but also on this page you can read that the Doctors may have found a way of treating some types of Cancers from the diet Josie eats to be able to live the ketogenic diet. Josie is tube fed 200mls pure fat 3 times a day.

All I will add here is in this last Video you can see the lovely side Katie has, she was truly lovely with Josie and though out always made eye contact when on stage while doing their show. I personally think Adele picked the right Lady to sing her songs, and I for one will be ever thankful to the team who put Josie’s make a Wish together. But most of all to Katie Markham.

Glut-1 is very rare as you have seen above with the movement disorders it brings its hard to live with and hard for the Parents to cope with as there are few drugs we can give to help the Person with it as most drugs have sugar or sweeteners in with cannot be taken. Josie is a lovely happy child and WE honored to have her as our Daughter.

Glut1 Deficiency

The Wobble had just started here.

josie's photo The day after meeting Katie, she had a lovely day in school.

Adele songbook

I know the plan is to take their show “Someone like you the “Adele songbook” over to the USA and Canada in 2019 I would as a massive thank you like to help promote this by giving the team free advertising here on my site, take it from me Katie Markham is very very good, so much so Id say close your eyes and you think your at an Adele concert. I would go as far to say that Katie has got better from when we first meet her in 2017 when the below video came out.

Someone pic

watching stage

 

 

http://www.someonelikeyou.co.uk/

This is my way of just saying THANK YOU to all who helped make JoJo’s day special 

Thank you, Holli, from Make A Wish, UK

Let’s not forget

Last but not least we would like to thank all the Doctors, Nurses, Surgeon’s, and everyone that have put their time into Josie to get her, and us, as Parents to where we are today. The Dedication you show every time we are in a hospital makes me proud of our health service in England. Parents like us also live our Childs Condition, when talking to others who have no idea of what you’re talking about, yet are willing to try and help XX

.

Disneyland Paris Meeting CHIP the Chipmunk

April 18th – 22nd 

So I guess you’re wondering why I have added this youtube video here on this website? Well on a visit to Disneyland Paris on the dates shown above. This Chipmunk (Chip) at 6.30pm on the 20th came to our table as did others I might add, but as you see here, spent real time with our Daughter, and though this person’s actions touched my heart because time was given to make a child laugh, we are sitting in the Disney Hotel Restaurant, with a child that cant eat without butter. This is a personal thank you to this Chipmunk. 

.

Meet the Bother of CHIP

Here is Dale the chipmunk with the Lady who was overseeing all the Disney Characters that Evening, but these two Chipmunks were really funny when together with this lady, I chatted with her about My daughters’ condition, and these two turned up, without sound they were so funny together.

chipmunk Dale

Chipmunk HandlerSo this is my Personal thank you to them all on that evening but to these three I have added to my website. This was a magic place for a child with special needs, let alone any child no matter how tall. xxx

 

Useful Links...