Maisie was born on December 23rd, 2021. The best early Christmas present any of us could ever receive, and the third little one to join our crew making us a happy family of five. Maisie was born after a relatively normal pregnancy and birth, but it became apparent to me; Maisie’s Mama, within the first few months that something about her was different.
With every doctor visit, I would bring up my concerns about her milestone delays, only to be written off as anxious. When Maisie turned 1 and was still not crawling or attempting to stand, my pleading was finally heard. At that same visit, our doctor noted a heart murmur and referred us to a paediatric cardiologist. Then began the real journey. They found that Maisie had extremely high blood pressure caused by coarctation of her aorta, a hypoplastic aortic arch, and a patent duct arteries. From here, Maisie was referred to SickKids.
This heart news, paired with the developmental delays she had been experiencing was enough for them to offer genetic testing and we gladly accepted. It came back that Maisie has Mosaic Trisomy 15. Meaning, about 30% of her cells have an additional 15th chromosome. Trisomy 15 is a bit different from other Trisomy’s, as the 15th chromosome holds a lot of critical genetic material. Unfortunately, in the case of a full Trisomy 15, it is not compatible with life. Any living person with T15 either has a mosaic, or partial duplications.
As you might gather, T15 is extremely rare, and that makes it hard to have a clear understanding of what to expect. Currently, Maisie has also been diagnosed with global developmental delay, and expressive speech disorder.
Maisie has had a balloon catheter procedure, as well as two surgeries to be able to fix her heart. She is currently stable, and thriving post-op, but it wasn’t without a few bumps along the way. Her cardiology journey will be lifelong, as the narrowing can re-occur as her body grows, but for now we are rejoicing that she is doing so well!
Throughout everything that she has been through, Maisie has been such a beacon of light and joy. There is not much that can bring her down, and she is one of the most happy, easy going children we’ve ever met. During one of her hospital stays, a nurse called her a “good for the soul” case, and we couldn’t agree more. Everywhere we go, she makes people smile and draws attention with her sparkling eyes and silly disposition. We feel so blessed that Maisie’s little soul chose our family to help guide her on through her life journey, and we have already learned so much from her too.
There’s no way around it, if your child is diagnosed with a life altering illness, your earth shatters and your heart breaks for the struggles they have, and will experience. It can be so easy to feel alone in your journey, but our community has been such a gift. Through friends, family and organizations like the Guelph Wish Fund, we can feel supported, seen, and loved. Thank you for the opportunity to bring joy to our girl, and our family’s life. We can’t wait to see what is in store for her!
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