Meet Liam

Liam was born via C-section on the 15^th of June 2010 at Cape Town Mediclinic. Prior to birth, he developed multiple fractures within the uterus, but it all healed within the womb. Sadly, he fractured his pelvis during delivery.

Liam was hospitalised for a week after birth because Dr Deon Smith, his birth paediatrician, did not know what was wrong with him at the time. He was sent for X-rays and upon examination of the x-rays, Dr Smith noticed that his bones were all unusually faint and very light. Dr Smith then called in Dr Karen Fieggen, Senior Geneticist from Red Cross, and she consulted with us about what was wrong with Liam. Dr Fieggen told us that he had a rare disease called Osteogenisis Imperfecta, also known as Brittle Bones Disease. It’s a group of rare genetic disorders that mainly affect the bones. It results in bones that break easily. The medical term Osteogenisis Imperfecta literally means “bone that is imperfectly made from beginning of life”. A person born with this disorder is affected throughout his or her lifetime.

His condition came as a shock as doctors didn’t pick up anything unusual during my pregnancy and told me that all is well with the baby. The femurs were recognised as being a bit smaller and shorter than usual and the specialist just asked me who in the family has short legs. I told him that I don’t really know who had short legs in the family, but he didn’t worry too much about this and didn’t take the matter any further. I was devastated and angry at the time of Liam’s diagnosis because I never knew that there was such a medical condition as brittle bones and that people could be born with this rare condition.

I thought that I had done something wrong during my pregnancy and questioned the doctor as to whether I didn’t take enough vitamins, or ingest enough calcium, or get enough rest. She explained to us that it could be hereditary if anyone in our family had the disease or it could be a mutation in either of our DNA’s.

A week after Liam was discharged from hospital he fractured two of his ribs while sleeping in my arms. He screamed and cried in pain and didn’t stop. I didn’t know what was wrong and heard a strange click. We immediately rushed him to Doctor Smith and more x-rays were taken. Two fractured ribs were identified and he was hospitalised for a week. It was really difficult…more of a nightmare, as Liam never stopped crying for 3 days while being at hospital. I cried and felt hurt too at seeing the pain and hurt in his eyes while going through this ordeal. I didn’t know what this was and how to handle it all. Dr Fieggen booked us for a few appointments in Orthopeadics and Genetics to see the relevant specialists for his condition and to see what they could do for Liam. I told her that I was depressed and very stressed out and she gave me the number of Rageema Livingstone who had a daughter with the same condition.

It was very stressful being alone at home with Liam and my three-year-old daughter Isabella At that particular time I wouldn’t allow her to touch Liam as I was scared that she would hurt him. We were also very blessed in many ways as my colleagues and senior staff at AMC Classic arranged meals on wheels for us for three months while being at home with Liam and Isabella. It was quite difficult handling two very young children while still having to do my daily tasks and housework.

After a few weeks I contacted Rageema and we spoke about our similar situations and shared a lot with each other. Having such support and understanding made things so much better for me, and gave me so much hope, peace and joy in my heart to know that there was someone who was coping with the same situation as me and it really uplifted and eased my heart’s content.

After my maternity leave, while being back at work, I have researched and read a lot about Osteogenisis Imperfecta, it’s types, treatments, and therapies.

I thank God for getting me through this, especially for the first 3 years of Liam’s life until he started at the Aiden Rose and Vista Nova School.

LIAM’S DAD WILLIAM

Liam is my second child and my first son. I am very proud of my boy for having such a great spirit considering his condition. As a father to a son, I had many hopes and dreams for him, such as being an athlete or soccer player, as every father has for his boys. But as we are a family of converted Christians, we know that God knows best and always has our best interests at heart, so we love him unconditionally. Although we were shocked with his diagnosis as we had never heard of OI before, we loved him from the very first time we knew he was on the way, to the first day we could hold his beautiful, lively and brittle body in our hands.

He has taken us on an amazing journey of discovery that we had never thought possible. From emergency rooms in the middle of night or day, to lengthy waits at doctors or clinic appointments at all kinds of hospitals and clinics all over Cape Town. Through it all, Liam has been, and still continues to be strong, independent, stubborn, demanding at times, and even unreasonable in his requests to do things on his own. The fact that he is very small and not able to walk has not deterred him at all from being as normal as any other seven-year-old boy. Ever since he received a wheelchair from Red Cross a few years ago, he has really shown how determined he is and we have met many amazing people at malls and during family outings like social road races which he loves to do. People look to him as being a real inspiration as they watch him in disbelief at the way he wheels himself around and knows exactly what he wants and where he wants to go. People have literally stopped, stared and came up to us to ask about him or just bought him something out of the blue or prayed for him because their hearts just go out to him. If they do ask him what he wants, he would usually respond with the word “chocolates”.

Our trips to Vista Nova school in the mornings give us a chance to spend quality time together as father and son. He is always trying to negotiate with me as to whether I am able to fetch him from school or give him money for tuck shop. I usually lose as he knows how to tug on dad’s heart strings. He also loves to do word cards and play games on our phones. He is always very enthusiastic about school, but grade one has given him a new feeling of being a really big boy and he seems to be taking it in his stride. As usual, he loves his class mates and seems to bring the best out of them, as he always did ever since he was at the Aiden Rose centre which was his first day-care. He was the life of the place, and according to his teachers had a great and positive effect on the mentally and physically disabled children around him.

He is still very playful and can also space out into his own dream world at home where he likes to watch cartoons and movies, especially Batman and Spiderman. He is also an avid gamer and is always keen to invite friends over to play with and challenge him as he gets frustrated when his father doesn’t know how to play properly. At school he is a very sociable, friendly and outspoken boy, and it seems like most children know his name as he engages with them regularly. His bus driver Vernon also has great affection for him. In the bus, on the way home in the afternoon, Liam and his close friend Monteez often end up falling asleep as the traffic and the long day get the better of them. This rest period usually causes him to be rejuvenated at night as he battles to fall asleep, and he would then come to me while in the lounge and say, “Dad I slept on the bus and I’m bored. Can I watch something until I fall asleep?”

He is a typical boy when it comes to his older sister and his younger brother, always sharing and fighting at the same time. The love-hate relationship is commonplace, as with any other family out there. As soon as they are not around each other, they miss each other like crazy. It has been challenging regards to the relationship between Liam and Kyle, his two-year-old brother, as they are constantly going at each other. However, we also see that there ten-year- old sister Isabella knows how to nurture them and shows great maturity in handling them both, even though she is still very young herself. She has a lot of love for them both and will pick Liam up and carry him when she has to as she understands his disability like no other ten-year-old.

He loves to walk around the neighbourhood and to shops, and also enjoys playing with his Jack Russell puppy named Sparky.