By Claire Reynolds Ella and Rocky’s mother/full-time carer–UK A mother shares a little piece of her life with two children with SWAN. I have two children who have a Syndrome Without A Name, otherwise known as SWAN. Two beautiful swans: Ella is four and a half years old, Rocky is two. As a first-time parent, I was naturally worried about anything and everything when it came to my precious little girl, albeit optimistic about all the new experiences that were yet to come. Everyone says “they will learn in their own time”, but when the noticeable milestones were being missed, concern grew. Whe ..read more

by Denise Humberstone, Editor at Making Chromosomes Count   If you have been waiting for individuals with Down syndrome who are *adversely affected by their condition  to finally be represented in all their glory on the big screen, meet Emily Felter, aka The Teacher of Patience! Within the first few minutes, you just know you are in for a roller-coaster of emotions simply because it is crystal clear this story is unadulterated, as raw as it gets, and will make for a difficult, uncomfortable and yet, deeply moving and at times funny watch, all at once. Families of children who are ..read more

By Sharon Smith – full time PhD student at the University of Birmingham. Research interests: disability, inclusion, risk/vulnerability, parent engagement, postqual/posthuman research. Inaugural winner of BERA Doctoral fellowship in 2019.   There is no other way to start this review than to say you really should read this stunning book, co-authored by two brothers, one of whom has Down syndrome.   In brother.do.you.love.me, Manni and Reuben Coe invite us into their lives for a short time, telling a story of brothers, of love, human connection, responsibility, reciprocal care, and mu ..read more

by Mark X. Cronin – Father, Advocate, Entrepreneur, Father to John at John’s Crazy Socks–USA I Cringe When I Hear Someone Say, “Everyone with Down Syndrome Is Always So Happy.” Every parent of a child with Down syndrome has heard that line. Let’s rephrase a bit: “Everyone who is Chinese is good at math.” Does that sound a little jarring? And it is only a small step to saying, “Everyone who is Irish loves to drink.” Let’s stop with the generalisations and stereotypes and see the people. My son John, now age twenty-six, has Down syndrome, and he often exudes happiness. Heck, he even started a ..read more

By Catriona Moore – Policy Manager at IPSEA charity, Contributor to Special Needs Jungle, Amy’s mother–UK A lived experience of Rett syndrome through Amy and her family A few years ago, my husband returned from a trip to the market with our two daughters. “Amy got complimented by an old lady,” he said. “That’s nice,” I replied. “Complimented for what though?” “Oh, just for being Amy.” It made me smile at the time and still does. Amy doesn’t need to do anything to be admired; just being here and being herself is enough. I didn’t always see things quite that way. When we first realised o ..read more

By Denise Humberstone – Trustee at Making Chromosomes Count How on earth do you go from being utterly devastated upon a postnatal diagnosis of Down syndrome to being elated at having that same baby in the cast of one of the longest-running shows in the UK in a matter of a few months?                         The diagnosis Following a series of miscarriages, when Alison, from Preston, Lancashire, gave birth to Harvey at the age of thirty-nine, she was ecstatic about finally becoming a mother and meeting her baby boy. Her pregnancy had ..read more

by Jecelle Alabia, Jessica’s sister–Philippines How art gave this young woman the opportunity to communicate and thrive. Meet one of our ambassadors: Jessica D. Alabia, a thirty-seven-year-old, self-taught Filipino artist with Down syndrome. Jessica is the last of eight children, the apple of her parents’ and siblings’ eyes. Her father, Jesus Alabia, was a retired policeman and her mother, Rutchellia Alabia, used to run a small fruit stall in her hometown, Valladolid Negros Occidental in the Philippines. Jessica never had the opportunity to go to school and was never given a formal education ..read more

By Jadene Sloan Ransdell–Matt’s mother, Florida, USA Leaving the parental setting “Sometimes I dream That he is me You’ve got to see that’s how I dream to be I dream I move, I dream I groove Like Mike If I could Be Like Mike Like Mike Oh, if I could Be Like Mike…” Those are some of the lyrics to a Gatorade commercial featuring a US basketball great, Michael Jordan. It aired in 1992, one year after my older son Michael (Mike) had graduated from high school, left home, and joined the United States Coast Guard. It was a time I was thinking a lot about the future and what it might hold for my yo ..read more

By Sarah Mayes, Social Media Manager at Making Chromosomes Count The story of a young man with Down syndrome behind a very successful clothing brand Kindness and love–that is the beating heart behind clothing brand 21 Pineapples, a company set up by twenty-one-year-old Nate Simon from Chicago, Illinois. A quick browse of the website shows just how positive the team behind the company is: “Be A Good Human” and “Today Is A Great Day To Change The World”. It’s clear that Nate is on a mission to spread his message far and wide–and just maybe the world will not be enough! Nate Simon has had a vari ..read more

by Jecelle Alabia, Jessica’s sister–Philippines How art gave this young woman the opportunity to communicate and thrive. Meet one of our ambassadors: Jessica D. Alabia, a thirty-seven-year-old, self-taught Filipino artist with Down syndrome. Jessica is the last of eight children, the apple of her parents’ and siblings’ eyes. Her father, Jesus Alabia, was a retired policeman and her mother, Rutchellia Alabia, used to run a small fruit stall in her hometown, Valladolid Negros Occidental in the Philippines. Jessica never had the opportunity to go to school and was never given a formal education ..read more