Marcus’ Story of Hope

I am tremendously proud of my children. They are three rare, unique gems and I love their exceptional, distinct qualities. However, my son is the rarest of the three. A genetic mutation gave him a truly beautiful soul and a heart which is incapable of malice. This is his greatest gift to the world. He may never truly understand what he has given to me but he has already taught me far more than I will ever teach him.

Marcus inspires those around him to be the best they can be without even knowing that he does so. He has delayed development so everything takes longer and seems so much more difficult for him to achieve. It took three months for Marcus to produce his first smile and at twelve months old, he had barely met any other milestones. Each and every milestone, that many parents take for granted, has taken an inordinate amount of repetitive, difficult and often uncomfortable or painful therapy in order for Marcus to achieve.

On 20th October 2004, our lives changed forever. My world had imperceptibly shifted on its axis and that night while I cuddled my brand new baby boy, my nineteen month old daughter and my husband, I truly believed I had everything I had ever dreamt of, and more. We named our son Marcus, wanting him to grow up to be strong, successful, and dependable.

Marcus was bigger than we expected: 7lb 15oz and three weeks early. His skin was as soft as silk, loose and wrinkled like a boxer pup, as though he hadn’t quite grown into it. That first night, I noticed he didn’t feed well, but thought little of it. He was my second baby and I felt confident and relaxed. I wanted to take him home. The next day, Marcus was checked over by the Paediatrician who noted his droopy eyelid before discharging us.

After just three days at home, we made the first of many visits to hospital with Marcus. He had a nasty eye infection and his droopy eyelid was swollen. We were pretty concerned about his eyes; they looked really sore, very swollen and lopsided. Over the following two weeks, his eyes improved but his feeding was becoming increasingly problematic. I was breast feeding but knew he was not feeding for long enough or often enough. We had to take towels, cloths and several clean outfits with us whenever we ventured out as Marcus was vomiting after every feed. One evening, Gary and I were sitting on the settee looking at Marcus and Gary said, ‘There’s something seriously wrong with Marcus.’ I was shocked, appalled that he could say such a thing. He just had an eye infection and reflux. How could Gary even think that there was anything seriously wrong?

At three weeks old, Marcus contracted RSV virus and refused to feed altogether; he was now a whole pound lighter than when he was born and he looked gaunt, malnourished and neglected. I could barely look at my baby without crying. I felt so guilty; I had failed to meet the most basic requirement of a mother – to nourish and feed my baby. We were both so desperately worried about him now. Reflux medicine was prescribed to control the vomiting. I hoped and prayed that the drugs would start to work, that he would begin to tolerate his milk and grow.

The drugs made no difference and I began bottle feeding to be sure how much milk Marcus was receiving. Life was becoming increasingly difficult by this stage. Arching his back and screaming every time the milk touched his tongue, I was spending almost all day feeding Marcus, drop by drop. He screamed whenever when you brought the bottle near him. Despite spending every waking minute trying to feed him, he still wasn’t taking enough milk to grow. Marcus also slept through at night; I’d have set the alarm clock to wake me up so I could force feed Marcus – it was such a dreadful time. I’d sit in bed sobbing, why won’t my baby drink?

At this stage, Marcus was admitted to hospital where his heart defects were discovered. His milk was changed, more reflux drugs were added and naso-gastric feeding commenced. We went home for another couple of weeks but Marcus still didn’t gain weight. The vomiting worsened as his gut was unable to cope with the increased volumes of formula that were forced upon him with the naso-gastric feeds. Leaving the house with Marcus was impossible due to the vomiting and every time someone asked about his NG tube, I struggled to fight back my tears which were permanently threatening to make an appearance. I didn’t know what was wrong with my baby, or why he wasn’t growing.

When Marcus was 15 weeks old and had just regained his birth weight, the doctors decided to perform biopsies of his gut and insert a central line so they could get some much needed nutrition into him. His gut biopsies were normal, as was the barium study, MRI scan, chromosome studies and abdominal scans. No-one could explain why Marcus was so sick and struggling to thrive. Marcus was fed via parenteral nutrition and a naso-gastric tube for the following few weeks.

Marcus remained in hospital until he was six months old and was a very regular patient on the gastro ward for the first 2 years of his life. On his first birthday, he weighed just under twelve pounds and by his second birthday he weighed just under 20lb.

Marcus’ first two years of life were definitely very challenging but after his second birthday, everything began to improve.

Marcus received his diagnosis of CFC Syndrome and for me, the diagnosis was a huge relief. Knowledge is power and being able to connect with the CFC community around the world has been a lifeline for our family. CFC International has provided our family with knowledge and support when we have needed it most. Raising a child facing medical and developmental challenges can be an isolating experience but having a ‘family’ who understand can be hugely comforting. The advice and support I have received from fellow parents and professionals, as well as the resources and research projects coordinated by CFC International has also been hugely beneficial.

Fortunately, Marcus began to take his milk orally so he no-longer required tube feeding. Encouraging Marcus to drink enough milk to sustain himself was extremely difficult and he lost a huge amount of weight at first. However, if we thought that was challenging, encouraging him to eat solid food was a far greater challenge which took almost another five years to conquer. I read every book and website that I could lay my hands on; visited every speech therapist, dietician and specialist in the North East of England; we travelled with Marcus to CFC conferences in America and the UK, desperately trying to discover the Holy Grail of nutrition and feeding! I was determined that Marcus should eat. I don’t know whether this was faith, pure pig-headedness or even a deep-seated knowledge that my son wanted to eat but I refused to give up; we refused to give up and as a family, eventually, we all helped him to enjoy a ‘normal’ diet.

Gradually, as his health and nutrition improved, Marcus’ sociable personality started to shine through. Aged two, he produced his first word using Makaton and more signs soon followed. Soon he was pointing, gesturing and signing to communicate with everyone and now, age eleven, he is still making good progress in his speech and communication which is still delayed but improving steadily. He needs lots of repetitive reinforcement but he loves to communicate and amazingly, he loves to read.

Also, Marcus’ motor -skills were severely delayed and when he was younger, no-one could say for sure whether Marcus would ever walk. Daily therapies included time in a standing frame wearing splints as well as stretches and exercises. Eventually, Marcus learnt to shuffle on his bottom and roll along the floor to reach his toys. Aged four, he took his first steps and we were the proudest parents! As I write this today, Marcus uses a wheelchair when he needs to be somewhere quickly or when we want to walk a considerable distance but he is able to move freely around the home and at school without too much difficulty.

Marcus currently attends a main-stream school with his sisters. Again, this is testament to Marcus’ determination and resilience. School is definitely not easy when you have cognitive delays; however, Marcus’ teachers tell me that his strength of character and loving nature are an inspiration to his classmates. They care for him, value his contributions and in turn, he learns from sharing his learning environment with positive role-models. There are many aspects of learning which are challenging for Marcus but he continues to surprise and delight us with his achievements. His reading is astonishing given that he cannot physically pronounce all of the letters of the alphabet, his knowledge of numbers and shapes is super and he adores stories, music and song. He may not know the words but his heart sings with joy.

I have huge hopes for my children. I want all three of them to be the best they can be; of course, that means something different for each of my children. For Marcus, I want him to achieve a degree of independence. I don’t know how much support he will need to achieve that. I don’t know how far his fragile body will carry him. What I do know is this: I will continue love, support and encourage him in every way I can so that he can continue to make a contribution to our community.

Gary, Sam, Joely, Marcus and Romilly Weston
North Yorkshire, England