My name is Tim - I am Jasmine’s uncle. I’m running this campaign on behalf of Jasmine’s parents, Katherine and Jamie. Here is Jasmine’s story in her mother’s own words:

Hello there, my name is Katherine. As you are reading these words I guess this means that you want to help my beautiful daughter, Jasmine-Maria. I want to take this opportunity to thank you from the bottom of our souls for any help that you wish to kiss into our hearts; whether it’s from sharing our story or giving just one penny. Thank you. Here is Jasmine’s story:

Excitement filled the hearts of Jamie and I as I lay with bated breath (moments after having an epidural for the planned C-section that had been arranged days before) as the imminent and totally longed for arrival of our beautiful baby daughter was finally about to fall into our hearts.

During my pregnancy with Jasmine everything seemed to go quite well for quite a big chunk of the time, until the size of our daughter’s head brought the health of our beautiful baby daughter into question, and filled our doctor with some concern. Our unborn sweet little daughter’s stomach bubble was absent during several ultrasound scans in the latter part of our pregnancy.

We were referred to a specialist hospital for more in depth monitoring. The stomach bubble was finally found after many weeks of investigation, and Jasmine’s head had grown enough to conclude the extra monitoring. We were discharged from the specialist hospital, to our relief. We were so happy that our little baby daughter was perfectly fine and healthy after all.

We could not have been more wrong.

At 10:07 on Wednesday the 8th of March 2017 our beautiful and very poorly daughter was born. Jasmine was very hurriedly handed to Jade, our very young midwife we had been assigned a few hours before, upon our arrival at hospital. To the distress of all who were there, due to our daughter Jasmine being so weak, she hadn’t taken her first breath (it emerged quite soon after her birth that her glucose levels were close to zero). She was a dangerously distressed baby at her birth and our poor little Jasmine needed oxygen and resuscitation moments later.

Our world, just like our hearts, shattered on that day. Our perfect baby girl who we love more than life itself was more poorly than we could have ever imagined. I’m crying right now as I write these words. I was hoping not to cry, but writing something such as this brings everything back. I suppose I wouldn’t be so tearful if our beautiful Jasmine had made a full recovery, like lots of babies do.

Shortly after Jasmine’s birth she was rushed off to the intensive care room in the neonatal unit, where she was hooked up to a drip to bring her glucose levels back to normal.

Miraculously she survived and was being looked after very wonderfully by the expertise of the nurses and doctors, who took care of her every need on the special-care baby unit.

It was discovered quite soon after Jasmine’s birth that her head was extremely small and misshapen, which later was diagnosed as microcephaly. It also became apparent very early on that Jasmine had an unsafe swallow. This was such heart-breaking news to Jamie and I as our darling daughter was so very unwell. We could not believe such a thing where a sweet innocent baby could be born without the ability to swallow properly. I’ve grown a new heart since then after about ten oceans of tears and nine and a half months of the biggest emotional rollercoaster I’ve ever been on in my life. I finally feel like I’m coming to terms with our beautiful daughter’s tragic condition.

After several weeks in hospital, our beautiful little flower had her first stroll in a pram. That is, the neonatal pram, as she was wheeled to her MRI scan. This scan gave us the final diagnosis and set everything in stone, even our hearts for a while. Our beautiful daughter Jasmine was diagnosed with bilateral perisylvian polymicrogyria.

They also detected a deep adhesion in another area of Jasmine’s brain, which, along with this diagnosis, explained everything: the unsafe swallow (which is why she was tube fed, why she required regular suctioning, and why she has needed oxygen several times since her birth), her rigid muscle tone (which she is on a muscle relaxant medicine for), her misshapen and abnormally small head. But none of this detracts from the beauty that exudes from her at every moment of the day. Even when she is crying she is the most beautiful baby ever.

On the day our little angel was discharged from the neonatal unit, we found a crack in our new hearts due to the consultant explaining in greater depth the seriousness of our daughter’s diagnosis. This helped us reach a fuller realisation of Jasmine’s condition. He stressed very purposely the term ‘life-limiting’, which we so wish was not in our ‘new’ vocabulary. We obviously hope by some miracle Jasmine’s consultant is mistaken, but we know he is the expert and the MRI scan has confirmed everything.

Jasmine came home two and a half months after her birth in the lovely month of May. Jamie and I were trained in all of the cares that meet her needs. Jamie had to cut his hours at work due to the intensity of the care that our bundle of love requires. Jasmine’s 2-year-old brother also makes our daily schedule very tiring; by the time our little ones are wrapped up in their blankets, like most parents, we are too exhausted to do anything else. Yet I feel so lucky to have such amazing children, and I can’t believe how lucky we are that Jasmine is with us, despite the odds and despite the traumatic birth she went through.

Up until July she was tube fed, which was difficult because we had to feed her every few hours, even through the night. But now she is peg fed from a pump, which has made a huge difference to us, being able to get just that bit more rest at night. Yet Jasmine still needs close monitoring: she has an apnoea monitor, in case she stops breathing, and she also needs regular suctioning, especially when she has a cold.

At almost ten months old she has just learnt to roll over; her sheer determination and perseverance is awe-inspiring, bringing a tear to my eye sometimes, but surprisingly a happy tear. I never thought my maudlin tears would become sweet. She just melts my heart whenever I am with her, I can’t quite believe she is ours.

Despite the obstacles that have afflicted Jasmine’s young life, she soldiers on very bravely. Our intense schedule and eternal-exhaustion are nothing compared to what our little baby girl endures with the bravery of a warrior on a day to day basis. But she is nowhere near the stage of a healthy ten month old, which is what we were told would likely happen by Jasmine’s consultant during the many appointments we had with him, especially on the day our angel was discharged from hospital. Despite knowing this information from almost the get-go, it still on an almost daily basis fills you with melancholy you didn’t quite think possible - because we know our chubsome, darling daughter is unlikely to live a long life. Like oil and water that never merges we will never let the sometimes-sadness get us down - because Jasmine is smiling, so are we.

Jasmine is unable to sit up in any way, and her condition affects her motor functions, especially around her face, which is more marked on one side than the other. She also doesn’t have full movement of her limbs, due to her muscle-tone being extremely rigid. Her right arm is very affected and regular physio and massage is a big part of Jasmine’s routine.

We have been told by the consultant that she will not be able to talk or walk properly, and that her understanding of language will also be an issue to some sort of degree as well. But only time will tell where on the spectrum she lies.

When she was first born, she was unable to cry in the way a healthy baby cries. Her cry achingly sounded more like that of a mouse. Now her cry sounds closer to what a baby’s cry sounds like, but with a much lower volume and quite laboured. Yet she rarely cries, which is due to her brain condition. She has made efforts to babble, but this is also not that often, and on the rare occasions when she does try to communicate she sounds like a baby dinosaur - her babbling sounds nothing like a baby-babble at all. But we don’t mind this, as our baby dinosaur melts our hearts even more.

Finally, on a positive note, everyone that has met our precious princess has been wowed by how aware she is, despite her abnormal brain and the condition that unfortunately chose her. The medical professionals involved in Jasmine’s ongoing care are eagerly encouraging us to immerse her in as many sensory experiences as we possibly can. Though sensory equipment and toys are costly, they can make a huge difference to her quality of life. Jasmine likes watching videos of waterfalls on the iPad; so one way we will spend the funds is to buy a projector, so we can cast all kinds of wonderful, watery imagery onto the walls and ceiling for her to admire.

Our appeal is to the kindness of strangers that may wish to help in any way, shape or form, whether it’s to share our story, or donate even just a penny. This would be met with a gratitude deeper than the universe, and you would be helping our little star to live.

Thank you.