A mother’s love

For this edition, because we are celebrating “Investing In Women” today, I had to pick a women-centric topic for this section. I must admit it was very difficult to choose, but in the end I decided to focus on mothers because of course, most mothers are also guardian angels to their children. Not to alienate those that are not mothers, or those who don’t want to be, but to show that there is potentially a mother in every single woman in the world.  We would hope so, so that the world can be a better place, full of women with that unparalleled fighting spirit to overcome anything that is thrown at them. My inspiration for the following pieces were drawn from two of my close friends that I don’t get to chat to too often – we get so busy – and I was completely blown away by their journeys as mothers thus far. Be inspired. You don’t know what you are capable of handling.
“God could not be everywhere and therefore he made mothers.”
– Rudyard Kipling

Tonye Faloughi-Ekezie:
The Ups And Downs Of It All

A mother’s love is unconditional; her instinct to protect her child is so profound that she is even willing to give her own life so that her child may live. “Dear Lord, take me, not her. Take me, not her.” These were the words Tonye repeated as she grappled with the possibility that she may lose her daughter Simone. This moment marked a turning point in Tonye’s life as she lived in the hospital waiting for her daughter (aka Sim Sim), to receive open-heart surgery. On the day the surgery came, all Tonye could think was, “if anything bad happens, please God, take me and not her.” Fortunately, Simone was as strong as her mother’s love, and both left the hospital to embark on a journey much bigger than themselves.

At four and a half months old, Simone was diagnosed with Down’s Syndrome (Down’s). Whilst shocking at first, Tonye praises the professionalism of the paediatricians who made the diagnosis in the pragmatic manner that they did. It is imperative for a parent to receive the news in a constructive way so that they begin building their family without making Down’s the centre of their every waking moment together.

Of course, it must be acknowledged that children with this form of “special needs” can carry on to lead normal, integrated and happy lives. This helped Tonye understand the diagnosis for what it truly was, a blessing-in-disguise. In disguise, because a child with Down’s does not signify the end of the world, and having this extra chromosome is not about the stereotypes that the uninformed make it out to be, and a blessing because Simone is growing up to be a fiercely independent, persistent, and big-hearted child – all that a mother could ask for. Having debunked these misconceptions in her own life, Tonye set off to end the unfair stigmas and create an environment where those with Down’s have the opportunity to thrive.

One day, Tonye was watching her son Ugo teach Simone how to use a toy, and she was hit with a sudden wave of inspiration. This small act of compassion was the spark that set into motion Tonye’s big project: a book series titled Ugo & Sim Sim. The books tell stories about the everyday life of Ugo, a curious six-year-old boy, and his sister Simone, an outgoing five-year-old with Down’s, who live in Lagos, Nigeria. The books aim to communicate Simone’s special condition to toddlers in an easy way by involving a continuous character with Down’s.

“It is important that we include local content in the context of storytelling,” says Tonye. “It is a crucial part of the story, and I think it’s important for people to know that these circumstances exist in Nigeria and that there’s no harm in talking about them in the open. There is no shame,” she added.In this way, the Ugo & Sim Sim series is a call for increased involvement by the community. The series inspires those connected to the condition within Nigeria and encourages a more welcoming community.

Tonye plans to extend the books into a foundation, one which would explore the world of Down’s and demystify it via documentaries, workshops and programs. Another key driver with the foundation would be to disseminate information to parents and caregivers at home. Therapy is crucial for a Down’s child, but it is also expensive and not covered by insurance. The idea is therefore that at-home tools and workshops would be provided at little to no expense. Part of demystifying Down’s Syndrome includes tearing down the stigmas that inhibit the child’s development. While these special needs children generally have delayed cognitive development, early intervention can reduce the delay significantly, as it helps in their learning. Tonye’s vision would serve as a platform to bring to light that the early years, 0 to 5, are critical for the development of a child with Down Syndrome’s and therefore stigmatising these kids doesn’t help them, their families or society. While Tonye admits she may be unable to eliminate the stigma completely, she believes that she has a crucial role to play in doing this to the best of her ability.

In addition to providing resources and debunking stereotypes, Ugo & Sim Sim and Tonye’s foundation seek to raise awareness internally – within the family. Tonye is a strong advocate for the role a supportive family plays in a child’s development – with or without Down Syndrome. “It is hard work”, she says, “but I like to think that even without Down’s Syndrome, a parent chooses how involved they are in the lives of their kids. I choose to be more hands-on with both my kids.” Ugo & Sim Sim and Tonye’s foundation highlight the need for educating every member of the family and understanding that Down’s children process things differently. This education helps manage the family dynamics, promotes more open-mindedness, and spreads awareness about the condition Dealing with a society that misunderstands Down’s Syndrome is difficult, but can be overcome with voices like Tonye’s, as she continues to advocate for acceptance and fight for the realisation that people with Simone’s special condition have feelings like anyone else and can be functioning working members of society.

“Ugo & Sim Sim is all about the ordinary in the extraordinary and the extraordinary in the ordinary”, describes Tonye, “It’s just life, and it shows that everyone has their own path and openness, and understanding makes the journey that much better all around.” Children with Down’s Syndrome have so much to offer, their immense capacity for joy and love has the potential to inspire anyone they meet, and they bring an entirely different viewpoint to the world. Tonye is inspired every day by her daughter Simone, finding beauty in the way she interacts with people, and has become more open-minded to the many possibilities and views she otherwise would not have noticed. The love for, and inspiration from her daughter, has pushed Tonye to achieve extraordinary feats in ordinary everyday life.

Jubie Wigan:
A Bittersweet Affair

Jubie Wigan’s busy life as a young professional came to an abrupt turn when her daughter, Aliena, was diagnosed with Type 1 Diabetes (Type 1). The diagnosis for Type 1 is an instant sentencing to a lifetime of hardship. The daily blood monitoring and injections rob an individual of the physical freedoms we take for granted everyday, but this disease is doubly cruel when it affects a child. At only two and a half years old, it is baffling why Aliena, an embodiment of the gentle innocence of youth, had to receive such a cruel diagnosis. Overnight, Jubie had to learn how to become a personal doctor for Aliena – including how to administer the 4-6 daily injections of insulin needed to keep her daughter alive. Each of these injections, which amounts to over 3,600 needles per year, is partnered with constant anxiety of how much insulin is needed, as too much or too little can be fatal. These daily rituals to combat Type 1 are difficult to understand or accept as a parent, let alone as a young child.

Compared to other illnesses, in which parents can place their trust in the hands of doctors and nurses, Type 1 requires a parent to act as a doctor at all times. Always monitoring their child’s blood glucose levels, always learning how these levels affect their child’s behaviour and mood, and always measuring insulin dosages at every meal. A child should not have to question why they must suffer from a disease, and a parent should not have to play the role of a doctor in addition to trying to raise a family. Jubie was inspired to start an organisation that would help other children and families that have been blindsided by Type 1, and thus, Sugarplum Children was born. Sugarplum Children is a website and fundraising initiative aimed at the families of children with diabetes.

It offers help, advice, and support for the children, parents, and other relatives and friends for whom a basic understanding of the disease is a necessity. As a forum, Sugarplum Children is designed to ease the perplexity of parents by offering first-hand experience, recommended readings, and inspirational messages, as well as give hope to the children by helping them realise they are not alone in this fight. That there are other children just like them who suffer in similar ways. As a fundraiser, Sugarplum Children is linked to the Juvenile Diabetes Research Foundation (JDRF), the leading global organisation funding Type 1 Diabetes research, which works every day to mitigate the effects of the disease for the millions of people that have it, and to prevent anyone else from ever experiencing it.

Founded in 2013, Sugarplum Children has enjoyed six consecutive years of success, passing its original goal of fundraising £1 million for JDRF with a total of £1.6 million raised to date. The Sugarplum Dinner, a luxury gala and dinner sponsorship event, first occurred in 2013. After initially raising £200,000, the dinner has been hosted several more times, and Sugarplum Children is preparing for its fourth dinner this coming November.

Though the flagship fundraiser is the dinner, the organisation has also had many other events, including the first-ever Sugarplum Sponsored Dog Walk, which took place this March, and which was Aliena’s idea – to do her own fundraising. In addition to hosting events, Jubie’s brilliant strategy of raising both awareness and funds lead Sugarplum Children to offer unique merchandise such as a the beautiful Annoushka Sugarplum Pendant, which was featured in the FT’s “How To Spend It” magazine and which is the result of a collaboration between Sugarplum Children and Jewellery designer, Annoushka Ducas. Then there’s the Sugarplum Candle, made in collaboration with Wick & Tallow, which symbolically offers a light of hope.

With the success of Sugarplum Children mentioned above, it is evident Jubie answered her call to action with as much fervour as humanly possible, truly showcasing just how much a mother’s love can accomplish.If any of you or your loved ones are affected by Type 1 Diabetes and you would like to find out more about how to manage the condition, please do get in touch with Jubie Wigan. The fourth Sugarplum Dinner will be held at V&A on November 14, 2019, World Diabetes Day, London, so please email jubie@sugarplumchildren.com for ticket or sponsorship enquiries.