Lily’s story – by Beckz

Rebekah (Beckz) posted in Unique back in Summer last year about her 6 week old daughter, Lily, who had been diagnosed with duplication 3q26.1-29 and I got in touch to say hello as another 3q baby mother. After Leanne (Evie’s mum) and I had emailed a few times some months later, it turns out she had also been in touch with Beckz and that they both lived near each other. Over time, we started emailing between us, talking about out girls, sharing special moments, concerns and worries. It’s a strange modern day phenomenon when people you have not even met become such an important part of your life, when two strangers are the people you want to share your innermost feelings with, who probably understand more about how you are feeling and what you are going through than some of your closest friends. It’s such a wonderful support to know Beckz and Leanne are always at the end of an email to bat things around with. We have formed a strong bond, not only with each other, but also with our beautiful children. I will be meeting Lily in person next month and can’t wait to give her a huge cuddle after all these months of seeing her progress. She is doing so incredibly well, achieving so many milestones and every time Beckz posts something I want to burst with pride at how far she has come since those first emails when Beckz was not so long out of neo natal care and was battling so many issues. Just last week cardiology told Beckz that a large hole in Lily’s heart had become a small hole – something they thought would take years to do. More evidence that it is difficult even for doctors to predict what our Unique children are capable of. Clever, clever Lily-Rose.

I know Beckz went through a great deal to have Lily and she inspires me with her strength, love and devotion. Here is the story of Lily Rose, Marigold’s other 3q sister.

  • Lily lives with mummy (Beckz) and daddy (Rich).
  • Lily-Rose Clark UBT 3&14

Lily was born on the 28th August 2015, natural delivery, 7lbs 8oz. I had polyhydramnious in pregnancy (which we now know can be related to genetic issues). As soon as Lily was born I noticed she had extra digits. Soon after she got taken to neonatal as she was grunting when she was breathing. They picked up her holes in her heart and some other issues. They told us they would genetically test her. She was in neonatal for 2 weeks and I stayed with her to be with her and make sure I knew what was going on at all times and they kept running tests.

When Lily was 4 weeks old we were given her results. We were told she had an unbalanced translocation between chromosomes 3&14 (but to ignore the 14 part as this was repeated DNA). We were told Lily gets her unbalanced translocation from my balanced translocation, which I carry with no presentations. I have never felt so guilty of anything in my whole life when I was told that – I wonder whether that feeling will ever go away.

My heart broke when we were given her diagnosis. I had no words just tears. I had no idea what this meant and I felt like our lives had fallen apart. My husband kept telling me over and over that she was the same child as the day before, she hadn’t changed just from hearing the news. The geneticists could not tell us much as her case is so rare. Just that her duplication was very large and she would have development delays etc.

Well, now our beautiful Lily is 8 months old, can roll, can sit unaided and babbles all day!. She was easy to wean and just doing fantastically in our eyes. Everyday is special and we are so proud and privileged to have her in our lives. Sometimes we are scared for the future, but we take it one day at a time. She has already taught us so much.

It has been wonderful to meet Leanne and Evie and Helen and Marigold. The journey is so much easier with support from people who understand.

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