CPN | Tilley Family: Siblings Together

Tilley Family: Siblings Together

Unique as they are, they are still siblings, together.

By Becky Tilley

My wonderful husband Carl and I have three children, Isabella 3, Joshua, 2 and Avary, 10 months old. Myself and my two youngest children share a rare chromosome disorder called Koolen-de vries.  Since making others aware of our diagnosis, a few people have asked me if I worry about Bella, who is neuro-typical and whether she will struggle growing up with two siblings who have a rare syndrome.

And truthfully, after being told by a neurologist that Josh may never walk, talk, see, or hear, we deeply feared the impact it might have on Bella and wondered how the two would relate as siblings. Thankfully, our Josh with support from physiotherapy and early intervention (and a lot of love!) is absolutely thriving. He can keep up with Bella physically which is an enormous joy for us all. Still, I am sure that Bella would love to be able to chat back and forth with her brother as they play but she has adapted to how Josh communicates.  She shares the same excitement her dad and I have for every milestone of progress Josh makes. Now she is doing the same for her little sister Avary who also has Koolen de vries.

For Bella, Avary and Josh are her siblings. I choose to find comfort in knowing that Bella doesn’t know any different as a big sister.  I also believe that a lot of how Bella responds to her siblings’ differences is influenced by how my husband and I are role models for her.  Besides providing the extra support Josh and Avary require, my husband and I treat them no differently than how we treat Bella. She sees everyday how we adore and encourage her siblings as well as her to learn, achieve and believe in themselves. As a result, she supports Josh by copying sign language and encouraging him to use it. She celebrates him by excitedly informing me of different sounds he makes in an attempt to say words. Josh has successfully learned to say two words (yeh and more) and Bella helps him practice by purposely asking him questions that he can answer with ‘more’ or ‘yeh’. 

While Josh has only a few words he can say, he has an excellent understanding of words. He can follow simple instructions which Bella appreciates because sometimes it can help them play together. However, because he isn’t able to verbalize his wants and needs, he can also get really boisterous, especially with pokes for a game of “tag”. He likes to throw and run away with her toys –  often with a giggle and cheeky smile as she chases after him. I remind Bella daily that Josh’s behavior is how he communicates. This can greatly annoy and upset her at times and other times she will run alongside him as they laugh together at his antics. It can be tricky to know how to respond but I do my best to discern when they just need to get on and accept each other and when I need to step in to maintain boundaries. There are times I need to tell Josh no and to calm down when he is being too much and his sister needs space. Equally I need to tell Bella at times to remember that he is actually just wanting to play with her, and she doesn’t always need to be so overly annoyed and upset by it. After growing up as the youngest of six children, I know that being wound up by each other is natural, and that just as with any siblings, they have their differences and similarities and good and bad days, but that ultimately the love between them is always there. They can be the best of play pals at times, which makes me so happy and thankful to see. 

Bella and Josh may have their little scuffles but are both always very gentle and caring. When Bella and Josh see each other upset, they offer one another comfort, either with a hug or finding each other a toy.  They do this for Avary too. It means a lot to us that they share a close and loving bond that grows stronger as they get older. I am glad that Bella, through her siblings, has learned that not every other child is like her and that everyone deserves love, appreciation, and respect. Recently her nursery school teacher told us that Bella is always very kind, caring and helpful towards a little girl in her class who also has special needs. This utterly warmed my heart as I know through her only family experience, she is learning inclusivity and to be accepting and friendly to those who are different.  I am thankful too that Josh and Avary have a big sister to look up to, one who cares very much about them both and wants to help teach them new things. 

I am also thankful that Josh and Avary have in each other a sibling that can understand what it is to be rare and help them feel less alone in their rareness. I have no doubts that our three beautiful children will continue to test and challenge each other as they grow.  I know my husband and I will keep nurturing and encouraging the bond between them and the love they share, so that no matter what happens in life they will always have each other for the journey.


About Becky

Josh and I were diagnosed with Koolen de-vries Syndrome, a rare chromosome disorder in May 2021, 14 months after his birth. At the time, I was four months pregnant with my third child Avary and was informed by my geneticist that she had a 50% chance of inheriting KDVS and I therefore could have two Kool kids. While Josh, Avary and I all share the same syndrome we are unique in who we are and how KDVS has expressed itself. Even though I encountered a lot of difficulties at school and on the playground, I never knew I had a rare syndrome. Because of my own struggles. I now teach all three of my children to be confident in their uniqueness, and identity regardless of how others treat them. I have become a passionate advocate and writer who loves to connect with others from all over the world. You can find me on Facebook on my Koolen Mama page, on Instagram  or my Mamas Heart Support group. Recently Becky contributed a story to Once Upon A Gene’s Rare Collection.


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