Maya's Adventures in Wonderland
WELCOME TO OUR WEBSITE!
Maya is our beautiful 6 year old daughter, She is a happy, smiley, chatty little girl who is full of love and laughter and is just like most 6 year olds except Maya is living with a life long condition called Spina Bifida.
Spina Bifida is a condition that develops in the first month of pregnancy and effects the growth and development of the neural tube (A neural tube defect) causing the spine and nerves to not form completely before she was even born. Where Maya's spine did not form properly it left her nerves exposed and a large blister type lesion grew on her lower back full of spinal fluid and her spinal nerves. Maya had major spinal surgery at 6 days old to correct this. Maya's nerves in her lower back were fused to her spine which also meant as she grew during pregnancy part of her brain at the back of her head was pulled down into her spine in her neck. This caused a condition known as Arnold Chari Malformation II and Hydrocephalus (Water on the brain). Maya had a VP shunt fitted at 22 days old to drain the extra fluid on her brain to her abdomen. She will rely on a shunt for the rest of her life as her body is unable to drain the fluid its self. Hydrocephalus is a life limiting condition and can be fatal if left untreated or poorly managed.
Maya has long term effects from spina bifida. She has problems with her bladder and bowel function, mobility, strength, movement, posture, sensation and co-ordination of her legs and the extent of this damage is unknown. She also has uncontrolled Epilepsy and may develop learning difficulties and developmental delay as she gets older. The extent this may affect her in the future is unknown.
We have developed this website to share our families journey of living with Spina bifida and Hydrocephalus as Maya takes us on her adventures in wonderland!! We wanted to do this to increase awareness Spina Bifida and Hydrocephalus, to be a source of information and HOPE for families facing the same challenges as us and to be able to share our journey with our family and friends at a click of a button.
Update: We can now upload youtube videos too so watch this space for lots of videos of Maya on her adventures!
How to use our website
In the tabs above you will find a section 'our story' This contains pictures and a blog of our lives month by month. The 'HELP-definitions' tab is basically a dictionary of terms and words used that don't crop up in day to day conversations. If you need more information/advise on a particularly word/term feel free to contact us or SHINE or by visiting www.shinecharity.org.uk where you can find everything you will ever need to know about spina bifida and hydrocephalus. Also in the tabs above you will find a calender of our up and coming appointments and events as well as links to SHINE and their FOLIC ACID campaign as well as a 'Links' tab which contains websites we have found useful along the way.
Feel free to share with others or get in touch (see the 'contact us' tab above)
Thanks,
Fay (Mummy), Aaron (Daddy), Maya and Max
Spina Bifida is a condition that develops in the first month of pregnancy and effects the growth and development of the neural tube (A neural tube defect) causing the spine and nerves to not form completely before she was even born. Where Maya's spine did not form properly it left her nerves exposed and a large blister type lesion grew on her lower back full of spinal fluid and her spinal nerves. Maya had major spinal surgery at 6 days old to correct this. Maya's nerves in her lower back were fused to her spine which also meant as she grew during pregnancy part of her brain at the back of her head was pulled down into her spine in her neck. This caused a condition known as Arnold Chari Malformation II and Hydrocephalus (Water on the brain). Maya had a VP shunt fitted at 22 days old to drain the extra fluid on her brain to her abdomen. She will rely on a shunt for the rest of her life as her body is unable to drain the fluid its self. Hydrocephalus is a life limiting condition and can be fatal if left untreated or poorly managed.
Maya has long term effects from spina bifida. She has problems with her bladder and bowel function, mobility, strength, movement, posture, sensation and co-ordination of her legs and the extent of this damage is unknown. She also has uncontrolled Epilepsy and may develop learning difficulties and developmental delay as she gets older. The extent this may affect her in the future is unknown.
We have developed this website to share our families journey of living with Spina bifida and Hydrocephalus as Maya takes us on her adventures in wonderland!! We wanted to do this to increase awareness Spina Bifida and Hydrocephalus, to be a source of information and HOPE for families facing the same challenges as us and to be able to share our journey with our family and friends at a click of a button.
Update: We can now upload youtube videos too so watch this space for lots of videos of Maya on her adventures!
How to use our website
In the tabs above you will find a section 'our story' This contains pictures and a blog of our lives month by month. The 'HELP-definitions' tab is basically a dictionary of terms and words used that don't crop up in day to day conversations. If you need more information/advise on a particularly word/term feel free to contact us or SHINE or by visiting www.shinecharity.org.uk where you can find everything you will ever need to know about spina bifida and hydrocephalus. Also in the tabs above you will find a calender of our up and coming appointments and events as well as links to SHINE and their FOLIC ACID campaign as well as a 'Links' tab which contains websites we have found useful along the way.
Feel free to share with others or get in touch (see the 'contact us' tab above)
Thanks,
Fay (Mummy), Aaron (Daddy), Maya and Max
Maya's recent adventures in wonderland
Maya's Petanque Day 2018
Once gain a huge thank you to everyone at the Vine,coates and everyone who turned up on a very wet and cold bank holiday to play Petanque, Ride the rodeo, eat drink and be merry but most importantly support Maya. The day has raised over £1000 for Maya and the money will go towards making adaptations to her home to increase her independance, a race wheelchair and therapies.
The winners of the Maya's Day trophy 2018 were Peter (Opa) and Dom
There was an extra Special trophy this year from the cross family in memory of Stu which was awarded to Mickey (Uncle Me-Me and Dan.
More photos will follow soon
The winners of the Maya's Day trophy 2018 were Peter (Opa) and Dom
There was an extra Special trophy this year from the cross family in memory of Stu which was awarded to Mickey (Uncle Me-Me and Dan.
More photos will follow soon
Run Disneyland Paris - September 2018
Watch this space for Maya's next adventures in Wonderland completing not only the 5km event bust also the 10km event at run Disney weekend at Disneyland Paris. This will be Maya's very first event and this distance. Can't wait to race her to the castle! In the mean time take a look at the video below of last years highlights.
Run Disneyland Paris - September 2017
31 days of Dreams come True
This is an awareness video we made in October 2014 for Spina bifida and Hydrocephalus. Please feel free to watch and share our you tube link. We made this as a family to not only increase awareness of Mayas condition but to give families and individuals that little bit of HOPE. Our journey is a roller coaster and life with Spina bifida and hydrocephalus is far from easy at times but LIFE with spina bifida and hydrocephalus is special and is definitely a life worth living. We hope to add to this in the near future to sharte even more of Maya's dreams and achievements now she is turning 6!