Delphine, originally from the UK, is mum to 12-year-old Tia and 15-year-old Rio, who has the rare condition 1q44 deletion denovo syndrome. She's also founder of the non-profit organisation #TeamAngelWolf, which promotes inclusion.
"When Rio was six months old, I remember looking at him on his play mat and saying to my husband, 'Something is wrong. I feel it.' He suggested I take Rio to the doctor, but I knew it'd be pointless and I'd be dismissed as a neurotic mother - he wasn't ill, it was just a feeling I had.
"The next day my husband was bathing Rio when he suddenly yelled for me to come and I saw our baby unconscious, floppy and blue in my husband's arms. We rushed to the hospital, but 10 minutes later, before even a doctor had seen him, he was his normal self again; whereas we had just aged a lifetime. The hospital could not explain what happened and said, 'Maybe he choked?' Every inch of me knew that was not what had happened.
"After the same thing happened again several times, and the doctors still couldn't explain it, we were advised to take him to Great Ormond Street Hospital (GOSH) in the UK, where we saw paediatric neurologists, cardiologists, physiotherapists and more, who did every test possible. The tests did not show anything, and the doctors explained that they did not know exactly what was wrong with Rio, but he was definitely not developing like a neuro-typical child. The doctors said that in unusual cases like ours, more children do not ever get a diagnosis than those who do. The unknown was a scary place, as it leaves lots to the imagination...
"They did however say that it was vital to start an early-invention program of paediatric physio, speech and occupational therapy. We came back to Dubai with a very different life and perspective to what we'd had two weeks earlier and our life of therapy started. I think it may have been around this time that I actually lost Delphine (myself). I grieve for her often still.
"When Rio was three I gave birth to our second child, Tia. She has been a blessing for Rio. Being a sibling to child with disabilities is not easy; there are lots of sacrifices and frustrations. But the bond between Rio and Tia is unique. The love and laughter and mischief between them is priceless!
"One day when Rio was four or five years old, we received a phone call from our UK genetics doctor, who finally gave us a confirmed diagnosis. We were told that Rio has a rare condition called "1q44 deletion denovo Syndrome". Having a definite name was comforting in many ways - it explained everything at last - but because the condition is so rare, doctors and therapists don't know anything about it, so they can only deal with the symptoms.
"After diagnosis you go through stages of grief for the child and life you thought you were going to have. Today, the grief continues, but in a different way; you just go through different phases and intensities as you reach different stages in the journey.
"Today, at 15, Rio is still wearing nappies, he still has seizures, he has sensory integration dysfunction, gross and fine motor disabilities. He can walk but distances are hard; he is still labelled 'non verbal', although he's starting to process more words. Although he can't do conversational talk he can sing and loves music. If life were a musical, Rio would be in a dream!
"One thing that has helped is connecting with other families across the world who have children with similar conditions. Rio's world has also introduced me to many other families here in the UAE in similar situations - I can honestly say these people have become my closest friends and biggest support.
"When you have a child with disabilities, life changes and many of those close to you disappear or just don't know how to cope around the situation. It is not their fault, but it can feel very lonely and rejecting, so meeting strangers who automatically get you is amazing and such a relief. They become your tribe.
Living in the now
"Today, I love Rio for who he is; I get frustrated when professionals try to mould him into a neuro-typical person. He is his own person on a different journey, which is no more or less than anyone else. I just want to help bring out his best, I want him to be happy.
"Rio's energy is magic and he teaches me daily; I constantly learn so much from him. He bathes fully in the now.
"Rio has truly directed our destiny. Because of him #TeamAngelWolf was created, which is a licensed non-profit association. Our mission is to spread awareness, inclusion and the integration of people with disabilities in the community; inspire the community to embrace their own health and fitness; encourage teamwork/family; and prove that 'anything is possible'. We do this through participation in sporting events, free inclusive community activities and talks.
"We have also been blessed to have found Rio's passion in life - being included in races! My husband does triathlons and other races, always including Rio (swimming pulling him in a kayak, cycling with him on a specialized adapted bike and so on). Now, Rio's 11-year-old sister has started doing triathlons with Rio like her dad, they are even creating Official World Records together.
"It is hard looking after a child with disabilities - it is 24/7 and for life. There's no respite unless you create it yourself. I believe there is a crisis of mental health issues for mothers of disabled children. It's tough on a marriage - reports say there's an 85% divorce rate within families that have children with disabilities. So it would be great if the community and friends could support the mums and dads, not just the children. If the parents are OK then the children will be OK too!
"If you have a friend who has a child with disabilities, do understand they may often have to cancel arrangements last-minute; be patient and keep inviting them anyway (we need to feel included in life too); offer to babysit so the parents get a date night; give the mum some time out to go for a walk/a coffee/get a quick catnap (I promise you she needs it).
"I don't want Rio to change to fit into society - I believe society should adapt to him (it would probably be a much happier place!). I dream of a truly inclusive world where Rio and other People of Determination are accepted as equals."
Follow the inspiring story of Delphine and her son Rio @TeamAngelWolf on Facebook and Instagram.
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Portrait photo by Anas Thacharpadikkal