Lyla was born on the 25 June 2016 delivered via an emergency caesarean.  We arrived home with a beautiful baby girl to enjoy a new chapter in our lives however we never imagined we would face the challenges we now do. Lyla wasn’t drinking milk the way a new born baby should, when the local nurse came to visit us she suspected that Lyla had jaundice so we were sent to neonatal and there she was treated for jaundice. After 24 hours Lyla still didn’t seem quite right, she was very floppy and didn’t wake up to feed for almost three days. We stayed at neonatal for eight nights were Lyla was tube fed for five days whilst further blood tests were carried out, all results came back clear. Lyla was given antibiotics and came around slowly so we were sent home.

Lyla wasn’t meeting the milestone a baby should, like lifting her head during tummy time and was like a new born baby for the first six months. I informed our local nurse and she referred us to a paediatrician. The paediatrician suspected that Lyla may have some form of a muscular condition and we were then referred to Great Ormond Street Hospital. Many tests later, Lyla was tested for congenital myotonic dystrophy (CMD) and we received the worst news of our lives. Lyla was diagnosed with CMD a month before her 1st birthday… there is no cure and it is a progressive condition. We were told Lyla may never walk, talk, may have respiratory, swallowing, eating problems, maybe need to be tube fed and have learning difficulties. This condition affects all the muscles in the body including your vital organs and heart. Sadly some children don’t survive to see their 1st birthday and if they do they may not live till adulthood.Lyla is now two years old, although she has physical challenges she can walk well with a hand as support, she hasn’t been able to crawl or sit up and can’t stand up on her own. She is not yet speaking, but WOW does she have a voice! She speaks her own language and has regular physiotherapy sessions. She doesn’t need help with breathing or have any heart problems and has a healthy appetite. She is such an affectionate little girl who loves to wave hello and give hugs and kisses to family and friends. She loves music and is a fantastic dancer. The condition is one of the rarest forms of muscular dystrophy and we need to create more awareness and raise money to go towards research to help find a cure for Lyla and all the other children and families affected by this condition.

The condition has affected my entire family. My family were tested, I have two sisters and we now know my dad, one of my sisters and myself also carry the myotonic dystrophy gene. My sister and I only show very mild symptoms of the adult form called myotonic dystrophy type 1. My dad has no symptoms at all. Only when passed from the mother does the gene expand and result in the congenital form which is the most severe form of the condition.

Great Ormond Street Hospital have been a fantastic support and the staff there are truly amazing. We truly believe that Lyla is a miracle and has brought so much joy into our lives. We wouldn’t change her for the world. However the truth is, her future is uncertain and we’d like to raise as much money and awareness as possible to put towards research to find a cure. Please dig deep and support our fund which we have named “Love for Lyla – #LoveSomeoneRare” to give Lyla and children like her who are fighting this rare condition a chance at life. Lyla is our saving grace.

I am proud to say I #LoveSomeoneRare – why don’t you?

How can you help?

To show your love for Love for Lyla, visit their online fundraising page.

If you would like to keep in touch and get involved with upcoming fundraising activities, follow LoveforLyla on Instagram

Setting up a family fund like LoveforLlya is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.

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