Maya's Adventures in Wonderland
WELCOME TO OUR WEBSITE!
Maya is our beautiful 5 year old daughter, She is a happy, smiley, chatty little girl who is full of love and laughter and is just like most 5 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. Mayas 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.
Maya has long term effects from spina bifida. She has problems with her bladder and bowel function, mobility, strength, movement, sensation and co-ordination of her legs and the extent of this damage 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, Alphabet day nursery, Whittlesey where Maya attends Mainstream nursery 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. Mayas 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.
Maya has long term effects from spina bifida. She has problems with her bladder and bowel function, mobility, strength, movement, sensation and co-ordination of her legs and the extent of this damage 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, Alphabet day nursery, Whittlesey where Maya attends Mainstream nursery 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 current adventures in wonderland
Training is in progress for our 3 Epic challenges to complete in the upcoming months
1. RUN DISNEY - Team We're all mad here Will be attempting Run disneyland Paris - September 22nd-24th Including a 5km and a grueling 1/2 marathon. Watch this space for updates and photos of our training and of course our outfits! :-)
2. Parallel London - Olympic Park, London On the 3rd September we will be taking part in the 5km even as well as the 1km Sensory circuit.
3. PGER - Team We're all mad here will be hitting Peterboroughs greatest running event the Peterborough Great Eastern Run with Maya hoping to complete the course in her best time yet. Everything crossed this will be Mayas first Racing Wheelchair event ever! We high hopes this is the start of many great achievements to come. We are also really pleased to introduce some additional members to our team so watch this space and contact us if you would also like to join us. There are runners taking part in both the 5km fun run (which can be walked) and the 1/2 marathon event.
1. RUN DISNEY - Team We're all mad here Will be attempting Run disneyland Paris - September 22nd-24th Including a 5km and a grueling 1/2 marathon. Watch this space for updates and photos of our training and of course our outfits! :-)
2. Parallel London - Olympic Park, London On the 3rd September we will be taking part in the 5km even as well as the 1km Sensory circuit.
3. PGER - Team We're all mad here will be hitting Peterboroughs greatest running event the Peterborough Great Eastern Run with Maya hoping to complete the course in her best time yet. Everything crossed this will be Mayas first Racing Wheelchair event ever! We high hopes this is the start of many great achievements to come. We are also really pleased to introduce some additional members to our team so watch this space and contact us if you would also like to join us. There are runners taking part in both the 5km fun run (which can be walked) and the 1/2 marathon event.
Get yourself active blog
Please take a look at our 'Get yourself active' blog aimed at encouraging others to get active.
MAYA'S DAY (Petanque)
On the 27th August 2017 the 3rd 'Mayas day' was held at The Vine, Coates. The day was a great success with an incredible total raised to support Maya. With the money raised we are hoping to purchase some specialist wheelchair racing kit. We are very excited to show you her progress over the upcoming months. A massive thank you to everyone who showed their support for Maya. It is truly overwhelming and I think we are all still in shock by your generosity and love. A special thank you to Toni and everyone at the Vine for organizing, running and making the day such a success especially Kris and Kerry and their beautiful daughter. Tresca and Phil for doing an amazing job organizing the petanque side of things, Darren and Lesley for their ongoing support and belief in Maya. Dom for well being Dom and raising extra money through his sponsored head shave. you are crazy but we love you! Jon for his generosity. Thank you for everyone who jumped in the stocks and got involved through out the day. Last of all to the big man himself Stu, with the biggest heart we know. You were definitely missed by all but my word you would be proud and there are no words to say how thankful we are for all you have done for Maya. Here is a few photos from the day!
2017 winners
Dom's Head shave by Maya
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,
