Hey Everyone, thanks for visiting our just giving page. On 21st March it’s World Down Syndrome Day. And we wanted to tell a bit of our story and raise money for Down Syndrome UK.

At 12 weeks pregnant we found out that Solly had a 50% likelihood of having Down Syndrome (DS). It was then we were first offered a termination and told we could terminate up to full term. This was never a consideration for us, but statistics show that 90% of babies with DS are terminated. We then had an NIPT test and the results showed a 95% likelihood of DS. We were made aware of the complexities of DS and other things that Solly may struggle with health wise.

At our 16 week scan they found a large amount of fluid on his brain and thought the part that joined both sides of the brain was missing. This was a huge shock and it was then we were told that Solly would be highly unlikely to walk, talk, communicate and toilet train; that he could have severe mental and physical difficulties and that it’s highly unlikely to change. Again we were offered a termination.

The next few weeks were full of emotions but we had to hold on for Solly and know that no matter what, he was our little boy and we loved him so much. Through our personal research during this time, we found various people that were completely unaffected by the missing part that joins the brain. So this gave us real hope. But also wish we had been told the whole picture.

The next scan showed that the fluid had reduced and the part that joins both sides was partially there, and we were so relieved. This felt like such a miracle. That scan also showed Solly had complete AVSD ( 2 holes in his heart) something he would need open heart surgery for at 6 months old. Given everything we had been told so far, at the time we didn't count this as bad news, as it was something that would be able to be fixed and have no lasting effect, if done well.

Our little miracle came 5 weeks early, he is perfect in every way and breastfed straight away. He melted the hearts of all the team in transitional care and NICU, where we lived for 4 weeks as he struggled with oxygen and we needed to work out medication amounts; and to get him stable enough to come home. He is an incredible little fighter, meeting lots of milestones of babies without DS and he is becoming so alert and stronger each day.

DSUK to many amazing things, but one thing that stood out to us is that they go into hospitals and train the maternity units about DS. It costs £250 to train a hospital and provide information packs for a year. I’d love everyone who’s baby has a suggested diagnosis of DS to get a good well rounded picture of it; not just the negative aspects and DSUK provides this. There are so many beautiful positives.

As the 21st March is World Down Syndrome Day. Throughout March we are going to walk 21 miles to hopefully raise £250. This is so that others can get a we’ll rounded picture of DS and all the beautifulness and not just difficulties it can bring. 21 miles isn’t far, but with around 3-7 medical appointments each week, regular tube feeding, pumping and administering medications over 20 times a day, it can be difficult to even find time to eat some days, let along walk. We will be posting pictures of walks on social media to keep people updated as we go.

Thanks for all of your support and any donation big or small.

Becky, Dave and a smile from Solly

Xxx