My sister would tease and torment me endlessly when I was little. Being 3 years younger I was an easy target. She tied my arms & legs to a piece of heavy furniture once, with my own school tie. Just left me there!  As we grew up (and i got stronger than her!) we became friends. She loaned me fake ID, we shared clothes, she looked after me when i was sick. 
I always knew she would make an amazing mother. 
But i never quite realised how incredible her skill as a mother could be. 

Learning that you are going to become an auntie for the first time was incredible. Waiting patiently on the day of the 20wk scan to get the text on whether it is going to be a little niece or a little nephew got even better. 
But that is the day that life sort of flipped. 

""Had the scan. They think he has spina bifida. Oh and its a boy". 

That was a just over a year ago, Jan' 2015.   Since then, her baby boy had one operation at 24 weeks whilst still inside the womb to try and correct his spine, he then arrived massively premature at 26wks, and has now spent nearly a year in hospital here in London being treated for an encyclopedia of different conditions due to various uncontrollable factors. My sister Lisa & her husband Alastair have been by baby Temi's side every single day. I have borrowed my sister's account of his full story which you can read below.  

My London Marathon attempt isn't just about celebrating Temi's ongoing fight.  Its about celebrating what can become possible when you absolutely have to do it.  SHINE is a charity that aims to help parents and families that have been through this, are going through it or will go through it in the future. £2000 will help the charity to run events and services to give much needed support to any families who receive this diagnosis.

Below i have pasted an account of Temi's full story written by his mummy Lisa recently, on the 1st anniversary of his diagnosis. I could think of no other way to fully explain what my motivation is for this marathon without referring to this account from her.      

Temi motivates her and Ali every single day to be strong.    What the 3 of them have shown me is just what is possible when love and strength prevails. 

I want to spread the word that sometimes telling stories of strength  like this can be infectious. When you absolutely have to do something you do it. You get on with it. And you do that by using your capacity to love. That's usually what you're born with and its the only thing you'll die with.  So long as you have that, you can get through anything. 

I am not a natural runner. I used to be sick in school PE lessons after running 1 mile. But one day I am going to tell Temi that if you wake up one day and you want to aim to run 26 miles, if you want to set a goal for yourself which is your own version of 'impossible' then all you can do is try.   Temi may not be able to walk the older he gets. But he will know that its not about being perfectly and physically able. We were told he may not make it through his first 3 days. So he has already achieved the impossible. He has pushed through and continues to do so. He is trying. All doing the unachievable is, is about the strength of your attitude. His attitude is what inspires me. That is what matters. But he could not have that without the love he has received.   

Temi was officially discharged from hospital on 15th Jan and now needs 24-hour care until his lungs grow strong enough to allow him to breath and feed by himself. The future looks rosy :-) 

I want to give a shout out to every single  nurse, midwife, padeatrician, neurologist, therapist, doctor, dieticians, physiotherapists, social worker, occupational therapist and porter working in the NHS today. You do not get enough recognition, financial reward or thanks for what you do. Living with 3 midwives i can personally vouch for this fact. They work relentlessly to help people.  Thank you for all you that you do for the patients and families

Please help get to our £2000 target. 

Written January 7th 2015, by Temi's mummy, my amazing sister Lisa.

Tomorrow it will be a year since my 20 week scan. The one where you expect nothing more than confirming the gender of your unborn child. I already knew he was boy though. His working title was Temi- short for Temudjin, aka Genghis Khan, a fearsome warrior who galloped the steppe of my womb, stabbing and looting as he pleased.

Tomorrow is a year since Spina Bifida crash landed into our lives. It would be joined six weeks later by Temi's other nemesis, Prematurity.

Since then we've spent all but 11 weeks of that year in hospital. Temi's story reads like a Klingon pop smash. Or scrabble billionaire board.

Spina bifida, myelomeningicele, hydrocephalus, chiari II malformation.

Ventricumelogacy, intra-ventricular haemorroage, carbopenam resistant enterobacterium.

Porencephaly, ventriculitis, ventricular periteneal shunt.

Bronchopulmonary dysplasia, bilateral incarcerated inguinal hernias, neurogenic bladder and bowel.

Bronchomalacia, tracheostomy, tracheomalacia, microlaryngeal bronchoscopy.

Subglottic stenosis, aspiration pneumonia, gastrostomy and two holes in the heart.

Temi now needs medical equipment to breathe, swallow and wee. I've never known what it's like to walk around the room holding him without being attached to an oxygen tank and ventilator.

When we heard 'spina bifida' I envisaged a wheelchair. I was devastated my child may never walk. I never envisaged not being able to breathe, talk or eat.

A year ago tomorrow we read about fetal surgery for spina bifida through eyes swollen with tears. I couldn't not do it. Whatever our son's future would hold, the hope of somehow making it better prevailed. Prematurity was a possibility but, like anyone who's never lived it, I didn't really know what it might mean. I brushed off any further dwelling on it. Anyway the statistic of fetal surgery babies being born before 28 weeks (12%) seemed low enough to risk.

Fast forward a year minus a day. Today the neurologist came. She was visibly amazed at Temi's leg movement and feeling. She said it went far beyond what she'd expect of a child with a spinal lesion at that level.

So the surgery may yet have allayed my initial fear- not being able to walk. Was it a high price to pay? Yes. We've spent a year going to bed scared every night. We've watched our child turn blue and go limp, again and again, the crash alarm signalling his lungs collapsing clanging through a frozen fog of disbelief. We know what it's like to sit by your unconscious baby's bedside and pray to a God you don't believe in for the opportunity to hold him one last time. We were only dimly aware of our health, careers and social lives sliding away.

Regrets? No. At that scan a year ago I was handed leaflets about medical abortion and told to go away and think about it. I thought about it for about 10 seconds. But it's such a personal choice and how could I judge for a second those whose lives needed them to make a different decision? Until you've been in that situation, you don't know how the impossible somehow needs to be made possible. Both decisions are brave and made out of love.

'Normal' has drastically changed its meaning for me now. My body's falling apart just when I need it to be energetic enough to get up at 5.30 and embark upon a relentless routine of preparing and administering formula and medicine through a tube, catheterisation, nebulisation, physiotherapy, tracheostomy care, organising delivery/ collection of supplies, all whilst he's tied to breathing machines. Oh and only sleeping 5 nights a week- carer funding is not as plentiful in our area as others.

Temi has a daddy who adores him. So much so that we often clash over how to do things. I want collaboration but also control. So much has been taken out of my hands that I cling to "the right way to assemble the machines in the pram" and "in what order to fill the feed pump". At least neither of us have the energy to fall out for long. He's more than my partner and the father of my child now. We've walked the darkest paths together and taken turns to scrape each other out of pits of despair and carry on, stumbling into the neverending darkness. We squabble and laugh every day, the way the right and left sides of the brain do.

The greatest love I've known has come with baggage. Terror and sorrow are here to stay. But I know those two foes for what they are- they grew out of love so how can I wish them away without losing the greatest light of all.

Smiling, dribbling, loving little man. The way he touches my face, looks searchingly into my eyes and beams, showing his two brand new teeth nestling into his bottom gum. What a precious and terrible lesson. The harder you have to fight for something the more fiercely you cherish it.