Our Story

 


My name is Ben and I am father to Jensen (8), and twins Elijah and Harrison (3).

Fatherhood is not what I had expected. It all started when Jensen was born.

After a normal pregnancy Jensen was born 2 days late but very small at just 5 pounds 8 ounces. From day one Jensen had trouble with feeding, he had low blood sugar levels and Jaundice. After 10 days in hospital, during which time he had many tests and spent a lot of time on the Phototherapy Bed, he was finally able to go home. All of his issues in the first 10 days were thought to be “normal” and just the result of being a small baby.

However, over the next 6 months things went downhill. Feeding was not improving so he was not gaining weight and to add to the fun he developed aggressive eczema all over his body. We went to many doctors who could not offer a diagnosis and eventually decided to go a private consultant who found out that he had an allergy to milk. As his development was so slow the doctors ran further tests and found he also had Hypermobility and Hypertonia and they diagnosed him with "Global Development Delay". Jensen did not walk until he was two and a half years old. He was sick every time he ate until he was three and a half and did not start to talk until he was four. We knew he was different from day one but could not get a diagnosis from doctors that made sense. All of this wasn't just Global Development Delay, something must have been causing it. It was heartbreaking.

We then fell pregnant with twin boys, and, due to Jensen’s difficulties, we were scared of what the result may be. However, the doctors assured us that there would be no reason for them to have any issues and that the likelihood of any disability was no greater because of Jensen’s history.

Harrison and Elijah were born premature and were in NICU for 3 weeks whilst they got strong enough to leave hospital. Harrison was very small and not growing so we thought that there may be something not quite right. We eventually got referred to a geneticist at the John Radcliffe Hospital; something not offered to us for Jensen. We took Jensen to the appointment with the geneticist and she was keen to get Jensen tested as well as Harrison. The results were that both boys had a rare chromosome disorder, but that the disorders were unrelated. Their disorders are non-hereditary as both parents DNA was tested and found to be “normal”. We were told the chances of two children being born with different rare chromosome disorders was like “winning the lottery twice”. Harrison’s symptoms are different to Jensen’s although some factors are the same. Particularly the difficulty eating and delay in walking and talking. Harrison also suffers from a very short stature akin to dwarfism.

The whole family were gobsmacked and to this day it is still difficult to cope with. I had a mixture of emotions; sadness, confusion, numbness, anger, guilt, "why me?" and isolation. I was diagnosed with OCD and Depression so found help in the form of psychological therapy. This has taught me a lot and, combined with a supportive network, has helped me grieve for the children I had anticipated and be present and grateful for the wonderful boys I have.

A big part of my mental health issue was around the lack of control and the lack of ability to change the situation (DNA is DNA of course and no one can affect that). I wanted to give something back by putting my focus into something productive that, ideally, could help others in my situation. Hey presto, Krafty Caps was born. Along with my sister and brother-in-law, we have created a fun clothing company providing high-quality, soft children’s caps that can be transformed by exchanging the patch on the front. £1 from every cap sold goes to Unique, a charity who inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder or autosomal dominant single gene disorder and raise public awareness. Have a look at Unique, they are a very special charity. www.rarechromo.org






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