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Our daughter, Megan, was diagnosed with Edwards Syndrome shortly after birth and lived for 34 days. Edwards Syndrome is a life limiting condition caused by an extra chromosome 18 in, for her case, all of her cells. 

At my 20 week scan, a cleft lip was picked up on but we were assured that was all and a simple operation around 4 months would repair this. I was never made consultant led until my routine midwife check up at 33 weeks believed I was measuring too big so was referred to the RAH for a growth scan to be told I was actually measuring too small. I went for weekly growth scans until I was induced at 37 1/2 weeks. We were told her low birth weight was due to a poor placenta or intrauterine growth restriction (IUGR). 

Megan was born on Friday 25th November 2016 at 22.04 weighing 4lbs 13oz. David & I continually questioned why she was so small given the fact our other two daughters, Rebecca & Katie, were born weighing 8lb 10oz and 9lb 2oz respectively. Megan was born with no gag reflex therefore was NG fed. We heard on the Monday they were taking bloods (as it turns out for chromosome tests) and was confirmed on the Wednesday (St Andrews Day) that she had Edwards Syndrome, a rare genetic condition neither of us had heard of. We immediately googled it and broke down in tears considering the majority don't even reach birth due to terminations, miscarriages and stillborns. Only 1 in 6000 are actually born with it, and even at that, generally die within the first few months. From then on having defied all odds to be here, we knew she'd be a fighter. We knew her life would be short but we held each other tight and faced the challenges ahead. We both live life to the full taking advantage of every opportunity made available to us and from then on we tried to allow Megan to experience as many opportunities as possible and tick things off her bucket list during her time with us. Given the time of year, our other 2 girls were practicing for their nativity play at school and nursery so the 'wriggly nativity' songs became very special to us and Rebecca and Katie would sing these to Megan often in hospital. Further tests showed that her head/brain, heart and kidneys all came back clear despite having the full Edwards form. Obviously weight gain was going to be an issue but were continually advised by staff in special baby care "it's just about keeping her comfortable and her tolerating her feeds". She was NG fed 45ml (1.5oz) of Aptamil every 3 hours - 1,4,7,10,1,4,7,10 repeat...therefore 8 feeds a day, which, as with any baby, is very restrictive and time consuming, given the relatively slow rate necessary to push the plunger of the syringe.

Megan got home in time to see her sisters perform their nativity play at church, go to the bookbug Christmas party and experience lovely walks around the picturesque village of Lochwinnoch. We were referred to Robin House in Balloch and subsequently were booked in for a short 3 day stay prior to Christmas. The whole time we were there I kept breaking down - always a place we knew about but never ever thought we'd have to experience, but we can't thank Robin House enough. Through this time Megan was able to enjoy Christmas Carol singing with instruments, Santa came to visit her, she enjoyed a lovely swim in the hydrotherapy pool, family walks around Balloch Country Park and we made precious hand and footprint canvasses with all our three girls that'll stay with us forever. The staff were quite simply, amazing. We were at home for Christmas and enjoyed a quiet family time, all 5 of us. After this, Megan suffered a cold and was rather wheezy. We gave her a small amount of calpol down her tube. However, breathing became quite laboured. The community nurse came to our house to do her routine tube change on the 28th December but felt her colour wasn't the best and breathing was an issue so referred her to the Panda Centre at the RAH and ultimately Robin House, where we chose when we believed Megan had decided the time was right. She passed away peacefully in my arms the following day, Thursday 29th December at 13.10 weighing a fraction under 5lbs. She was with us for 34 days. 

It's been an emotional roller coaster for us but take pride and comfort in believing Megan never suffered. At this point, I'd like to say a huge thank you to Robin House and all of their wonderful staff who made us feel so at home. Nothing was a bother to them and through their efforts and kindness, we were able to enjoy quality family time and make precious memories. 

We are looking for as many family and friends to participate in the kiltwalk in memory of Megan to raise much needed funds for Robin House and CHAS.

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