We walked 130 miles of the Shropshire Way in memory of the 130 days we had with Ottie and to raise money for the Evelina Children's Hospital, who cared for her and for Ronald McDonald House Charities, who supported us and allowed us to spend every moment possible with her.

Barnes Bridge Ladies Rowing Club have rowed 130(+2) miles for Ottie in 24 hours.

Friends will be riding 130 miles in Otties memory on Saturday 24th April.

Ottilie was our ray of sunshine, she arrived on the 10th of January and our world lit up. Her skin was like satin, her little fingers held on to our fingers and like all parents, we had never known love like it.

Her life was not easy, but it was one filled to the brim with fierce love and hope. It was perhaps not what you would ever wish for for a little person, but I will wish for it again for eternity, because despite the mountains we had to climb together, it was the only life we got with Ottie and she is worth celebrating. When her day in the sun was over, our little Mayfly had had the best medical care that the world had to offer and her parents by her side all day every day. It was the Evelina Children’s Hospital Neonatal Unit that provided her care and Ronald MacDonald House that gave us a home next to the hospital.

These two bodies, the Evelina and the RMHC gave us the only thing we wanted and that was time with Ottie. So that they can give more parents more precious time with their babies and children, we want to raise money for these charities, and we would like your help, please join us and our ‘Walk with Ottie’. We dreamed of taking Ottie to Cornwall, so we decided to walk 130 miles of the Costal Path for the 130 days we had with Ottie. Unfortunately Covid has forced us to change our plans and we are now walking the Shropshire Way. We would love you to join us there if you can or join us in spirit on Saturday 3rd April and walk wherever you are in the world and donate to these worthy charities.

For those who would like to know more about Ottilie's medical journey, please read on: Ottie was wanted and planned for, I took my tablets, I kept my baths cool, my heart rate below 150 and avoided all listeria giving foods, I was fairly and consistently sick throughout and every night when I went to sleep I thought about meeting my baby and bringing her home.

Ottie was small in utero and her growth slowed towards the end of my pregnancy, many tests were run and nothing exceptional found. After she was born, we had 2 days with her in the post-natal unit before she was rushed to SCUBU (Special care baby unit) with her first bout of pneumonia. I say it with seeming ease with retrospect, knowing this was not the worse moment, but at the time, the trap door opened and I couldn't breath with fear for Ottie. After a further few weeks on and off breathing support, of almost going home and then more chest infections, Ottie's condition deteriorated to the point of an emergency transfer to a tertiary hospital, in our case St Thomas; NICU (Neonatal intensive care). Our transfer was desperate and perilous but we knew it was life of death for Ottie. That night, my brother Tom and the staff at Tommy's saved her life for the first of many times.

WIthin a few weeks with lots of absolutely terrifying moments/hours/days and even the need for resuscitation, Ottie's breathing tube had been removed, she was breathing on her own and even having a go at breastfeeding again. We were moved out of Intensive Care to HDU (High dependency unit) and even as far as SCUBU. Home was in sight again.

SCUBU meant we were more involved, less machines and more cuddles and her first ever bath (she blissed out in the water, poo'd and went to sleep). We were so happy and probably denying some signs that things still weren't as they should be. I remember so clearly the outreach team coming in daily to talk Mum's through transitioning home and thinking, when will it be Ottie's turn, please God let it be our turn. Instead we had a stream of incredible consultants (I both hated them and needed them desperately for their presence in our lives) coming in to see why Ottie was 'failing to thrive'. It was not long before we were back in HDU and Ottie's breathing was again needing more support. Genetics had been involved on and off but most test had come back negative, but it was at this point that the idea that a genetic component was revisited by her team.

Ottie, James, me and our families in some cases, were tested for increasingly rare conditions. In the meantime, Ottie's speed bumps had now landed her in theatre twice, each time anesthetics being a huge risk for such a poorly baby. I am fairly sure I ground through half my teeth at this time, willing with every fibre for her to be ok. We went into every meeting with every new doctor ready for battle, our daughter was ok, we would be going home and she would have a great life. Over time we adjusted to a different life with her, we considered adapting our home, read about the therapies she would need and those that could enrich her life, whatever that might look like. I contacted Mums with children with disabilities and rare genetic condition and joined support groups. Whatever life had in store for Ottie, we were there with her and celebrating her.

I believe that almost all specialities at the hospital came to offer their help, tests and suggested diagnosis. In the hope of a diagnosis and constantly checked for indications of another set back, Ottie had almost daily blood tests, she was rarely without cannulas delivering drugs from antibiotics to morphine, every time somebody approached her cotside with a needle our gut instincts told us to wrip it from their hands, pick up our baby and run (potentially stabbing anyone who got in my way with sed needle). The blood test and x-rays were an almost daily insult for Ottie and not being able to take that pain for her, I will never forgive myself. At the start of her life, Ottie was well, she came out little but crying and wriggling but as time passed, Ottilie's needs were increasingly significant, complex and diverse, she needed help with her breathing, metabolism, bladder, muscles, to name a few. She had hundreds of blood tests, MRIs, X-Rays, Functional tests and others I can't even remember, with each negative result (or in my head positively negative test) we both celebrated and at the same time apologised to our little girl that we had put her through another test.

All of these incredible professionals had to not only try and work out what was wrong with our puzzling little girl, but navigate our bombardment of questions and very unqualified "suggestions and advice". We were the awful parents that read a few (hundred) medical journals and believed that qualified us as a neonatologists. It was thought that Ottie must have a form of congenital muscular dystrophy, but after months of tests, no known form of the condition was found. It was only months after her death that we would get a diagnosis, Ottie had a condition so rare it does not yet have a name, so rare that she is only the 6th person to ever have been diagnosed. The cruellest lottery.

The week before Ottie died, we had renewed hope and momentum. We had a plan to get her home with a little breathing support, she was gaining weight and I was back to telling her about what sea air is like and how she will enjoy trees and nature. I will remember this time as we walk the cornish coast in her honour, I will remember her and remark at her beauty as I look at the spectacular coast. In May, Ottie's breathing deteriorated, her lungs were consolidated and partially collapsed, after a scan of her heart she had developed dilated cardiomyopathy. On the 17th of May I was holding her in my arms, kissing her head, chatting to the nurses when her blood saturation dropped, within a few minutes the emergency alarms had once again been called for my little girl. We were asked if we wanted them to continue the resuscitation. Yes. Of course.

Sitting in a meeting later that day, the type of meeting no parent should ever have to go to, we were full of questions, what next, how can we help her, when can we extubate her? We did not realise until later that night that the 'lets wait and see how she does', meant the end was near and inevitable. It was with our family through the coming hours that we realised what must be done for Ottie. On May the 18th we withdrew life support, Ottie died in our arms with her family around her and in no pain, a small mercy we could provide for her.

Ottilie Elizabeth Rose Lawson

Walking with Ottie

2nd April - 8th April