Spina Bifida and Artificial Leg but still Smiling

Meeshe
Meeshe Online Community Member Posts: 6 Listener
edited October 2021 in Rare, invisible, and undiagnosed conditions
Hi my name is Meeshe. I have Spina Bifida and an artificial limb. I had spinal surgery at Great Ormond Street Hospital at the age of 3 years old to release my spinal cord that was tethered to my deformed pelvis (I have no coccyx, my pelvis is small, tilted and rotated and I have scoliosis)  I lost my left leg below knee at 14 years of age due to ulceration from lack of circulation and sensation to my left foot. I had to have home tuition and passed a few exams going on to be a live in nanny to a 3 year old boy. I have been so blessed to have 3 beautiful children born by Caesarean section.  
Time is taking its toll on my body now and my right hip is very painful, excessively worn and needs replacing but is inoperable due to the deformities (I’ve been told it would dislocate!) I have a trapped sciatic nerve that I’ve been told could sever at any time leaving me paralysed.  I’m lucky to live in a bungalow that is wheelchair friendly with a wet room.  My husband and I drive a Ford Tourneo Connect with hand controls that I got through the Motability scheme.  My wheelchair goes in the back easily. Every night I go to bed I pray that I’ll still be able to move in the morning and every morning I Thank God that I’m able to move and be alive! 

Comments

  • Chloe_Alumni
    Chloe_Alumni Scope alumni Posts: 10,506 Championing
    Hi @Meeshe and a very warm welcome to the community. I hope you find it a positive environment. Thank you for taking the time to share your story- loving the positivity! You might find the physical/ mobility impairment board useful to look at! 
    If there is anything that I can do then please do not hesitate to be in touch :) 
  • curiousgirl96
    curiousgirl96 Posts: 8 Listener
    Hello Meeshe! 

    Welcome to the community!! My son has Spina Bifida too. Is it okay if I PM you later with a few questions or not? 
  • Meeshe
    Meeshe Online Community Member Posts: 6 Listener
    Hi Leah
    Nice to hear from you.  Of course you can ask me a few questions. That’s why I joined to see if I could help anyone in any way. Please do get back in touch. 
  • curiousgirl96
    curiousgirl96 Posts: 8 Listener
    What level of Spina Bifida do you have? My son’s lesion level starts at L1 and goes downwards. He cannot walk unaided and we have started claiming benefits for him to make our lives better. I have some more questions: 

    How does it impact your mobility? Do you have a Blue Badge/high rate mobility or not? How old are you now? Are you cathed frequently or not? What sort of issues did you have to cope with growing up? Did you get bullied by your so called friends or not at school? What was the appointment load like? Do you use a wheelchair or not? Can you walk? Do you have any advice for newly diagnosed families? What would you tell them? 

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