Mia’s Missouri Mission

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Mia’s Missouri Mission … is exactly that! My grand-daughter, who is now 5, has severe Cerebral Palsy and needs to go to the USA for a life-changing operation!My beautiful grand-daughter, Mia, was born (unexpectedly) at 27 weeks! To explain how/why, my daughter was rushed into hospital at just over 6 months with severe abdominal pains where, after monitoring her condition, she was sent home! The next day she was writhing around on the bed at home and, after many hours in pain, it was decided (by ME!) that she was going back to hospital and I was NOT accepting her being sent home again!

On arriving at hospital and after monitoring my daughter, we were told that my daughter would have to have a C-section (which I could be present for)! Although it was a shock, we were grateful that something was being done as she felt that something was wrong and wanted her baby to be safe and cared for (outside of the womb if necessary)! After changing into “scrubs”, ready for theatre, my daughter suddenly became aware of something being seriously wrong as a heart beat could not be detected yet she was in excruciating pain! It was established that my daughter was having a placental abruption and needed an emergency C-section (which I could NOT be present for)! Of course I was concerned and it was at this point the midwife explained the full extent of the operation – there was a strong possibility that I could lose my unborn grandchild/my daughter/BOTH! The C-section took place with me sitting outside theatre for over 4 hours!

Mia was born weighing less than 2lb and was placed in ICU. 5 days after birth BOTH lungs fully collapsed and she was given 3 WEEKS to live! We (myself and my daughter) were absolutely devastated! This little girl had fought so hard to be here (born flat and resuscitated a number of times!!) and now we were being told she would not survive! I REFUSED to hear the words of the doctors/nurses/professionals – my grand-daughter was NOT going to die, she was going to survive and I was NOT prepared to lose her or allow my daughter to believe this was the end of her life as a mother to her beautiful daughter; NO, Mia was going to live and if it meant being with her every single day then that was EXACTLY what we would do! We took it in shifts, day and night, to be by Mia’s side; we sang to her, prayed for her, talked to her and, when we found we had run out of ideas, we did it all over again – this little girl had a right to live and if she could fight to be with us, we owed it to her to fight for her to stay with us!! At 6 weeks old she had a heart operation – another minefield for her to conquer (which she did) and another minefield we had to go through (which we did)! She survived EVERYTHING she went through – all the tests, all the needles, all the pulling, prodding, pushing … she survived!!

Mia left hospital 8 MONTHS after birth (born August 2006 – home April 2007)! All the time she was in hospital she had been on oxygen and, we were told, she was dependent on it and would be for a very long time so the oxygen came home with us! We knew Mia was a feisty little thing but, at home, with no machines, no nurses, no professionals on hand, my daughter HAD to be all of those things – she was on her own with her beautiful daughter and she knew Mia better than anyone else and she proved it! Mia, the little girl we were told was totally dependent on oxygen, came off it 3 WEEKS after coming home because my daughter KNEW she could manage without it; Mia took her bottles without choking because my daughter KNEW she could manage it; Mia no longer needed the tubes going from her nose to her stomach because my daughter KNEW she could manage it – Mia’s MUM was in control now and Mia was responding to her mother’s love and care!

4 months after coming home we found out Mia was suffering with severe hearing loss – another minefield for her to conquer and another one for us to conquer with her! We were told she was moderately deaf in one ear (left side) and profoundly deaf in the other!! Was there really a God? Now my faith was being tested more than it had EVER been! How could this be happening? Why was this happening to such a beautiful little girl? Why was this happening to my beautiful daughter? WHY? WHY? WHY?

At a year and a half Mia had to undergo an MRI scan where it was confirmed that Mia, my beautiful grand-daughter who had battled to be with us and had overcome so many obstacles in her short life, had Cerebral Palsy! I cannot describe that day because it is all a blur – I remember looking into my daughter’s eyes and seeing utter disbelief, sadness and, most of all, devastation! She had been so strong for so long, being a single parent who had single-handedly battled with EVERYTHING thrown at her since Mia was born, but this absolutely floored her – literally! I had to pick her up FROM THE FLOOR and try to muffle the wailing (something I hope NEVER to hear again!) and try to dry her tears which seemed never-ending! What could I say to make her feel better about this situation? I had said everything I possibly could EVERY TIME we had had another obstacle to overcome but, for this, there were no words! No, my God would NEVER do this to a defenceless baby – especially one who had been through so much! Then, without any warning, I found the strength to look my daughter in the eye and say “Listen, of course this is not what we want to hear; of course this shouldn’t be happening; of course I wish I could take all the pain and hurt away from you and Mia but we have heard it, it is happening and I can’t take the pain and hurt away but I promise you, with everything I believe in, I will be there for you and Mia forever and always and will do whatever it takes to make sure that you both NEVER feel as though you are alone!” Don’t ask me where this came from because I really cannot say but I meant it then and still do now! I will do whatever it takes to ensure that Mia, first and foremost, NEVER feels let down by me and, in turn, my daughter will NEVER feel that she is on her own! My daughter forgets that although Mia is HER daughter (a now beautiful 5 year old), she (MY daughter) is my baby too (almost 24 years of age but just as special to me now as the day she was born)! She seems to feel that she is burdening me by coming to me with things we all take for granted with able-bodied children (e.g. is she giving Mia the right sort of upbringing, is Mia’s home a loving one, is she a good mother)! She is an absolutely fantastic mother and I dare ANYONE to say otherwise – set aside the fact Mia has Cerebral Palsy, she has proved time and time again that she goes above and beyond the call of duty as a mother when it comes to her daughter and I am so very proud of her and make her aware of that fact at EVERY available opportunity!

Now, as I stated, Mia has Cerebral Palsy – this is due to brain damage (whether this was before, during or after birth is unknown). The left side of her brain has been affected which, in turn, affects the right side of her body. She is very weak on her right side and requires regular physiotherapy. She has many professionals in her life (occupational therapist, physiotherapist, doctors, etc.). Due to her hearing loss, she has a speech and language therapist and is, I am pleased to say, very good at signing (although her eyes and facial expressions are her favourite way of communicating and shouting at you if you don’t understand what she wants! ha ha)! She attends a Special Needs School and is LOVED by both teachers and the other children – you really can’t help but love her though because she is a cheeky little girl who is ALWAYS smiling! She has to wear splints in her shoes (to keep her feet flat as she toe-walks), she has a standing frame, a special chair, a special walker and other equipment which she uses on a daily basis! All these items are necessary to ensure Mia can maintain movement in her limbs as she cannot walk (my daughter taught her how to crawl as she used to just lay on her back on the floor where she had no strength in either her upper or lower body)!! There is no known cure for Cerebral Palsy BUT there is hope!

Medical opinion given to us is that there is a specialist in the USA (Dr T S Park) at St Louis Children’s Hospital, Missouri who has specialised in a procedure, Selective Dorsal Rhizotomy (“SDR”), for over 25 years! He has helped over 2,000 children with Cerebral Palsy to walk! He does not claim to be a miracle-worker but he is absolutely dedicated to giving children with this condition the best possible start in achieving goals others (able-bodied) take for granted!

Please view this link and you will understand exactly what I mean.

This procedure has helped so many children (and parents) realise dreams they NEVER thought possible and, as I am sure you will understand, I want exactly that for Mia! Not only would this allow Mia to, hopefully walk unaided, it will also give her a quality of life that she so deserves! Can you imagine taking a child to the park and watching her smile and laugh as she sees others playing but knowing she cannot get up, run and play with them? Mia’s world consists of her sitting and watching children at play, watching their mouths moving and mimicking those movements – her facial expressions are priceless BUT her leg movements are non-existent! Imagine your children/grandchildren/nieces/nephews sitting daily watching others – it is absolutely heartbreaking!

I intend to do everything I possibly can to raise enough money to get Mia to Missouri – I will even offer my services at cleaning/ironing/sponsored walk, run (ANYTHING – except shaving my head (too much of a coward for that one I am afraid! ha ha)) but I need help! I need to raise up to £50,000 which, although a substantial amount of money, IS achievable if, as I have shared this page with you, you can share it with your friends … and so on!

The money collected will go towards the procedure, the flights, the accommodation, the physiotherapy (all in the USA) and, on Mia’s return to the UK, continued intensive physiotherapy etc. Unfortunately the SDR procedure has not received as much coverage as I believe it ought to here in the UK (although a specialist in Bristol, who has been trained in the procedure by Dr T S Park, is now carrying out surgery) but I have been fortunate enough to be a part of a group who ARE changing the views of so many and, hopefully, the procedure and its benefits will be something available on the NHS in years to come! Until then, the USA is the place to be and I am determined to get Mia there with your help!!

You can help by donating (no sum too small) or, if you decide you would like to do something yourself to raise money towards getting Mia to the USA, PLEASE, PLEASE, PLEASE go ahead! This little girl is so deserving of this and I would like to think I have explained exactly why it would be so beneficial to her!! The decision for Mia to have this procedure is one that has NOT been taken lightly by my daughter – she has battled with herself time and time again BUT after investigating EVERYTHING and questioning EVERYONE she possibly can, she is now convinced that her daughter (my grand-daughter) ought to be given the opportunity to prove what we already know … she is just as determined to lead a near ‘normal’ life as we are determined for her to have one!!

Thank you all so much for taking the time to read my page. I sincerely hope you understand why this is so important to us and why we would be eternally grateful if you could share this with EVERYONE you know in order to change Mia’s life … FOREVER!!

Tessa

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