Brief background :
Claire was born to her Mom, Sue- Ellen 10 years ago and was a healthy, pretty and alert baby girl. She progressed very well and was a good eater and a good baby as well. When she was just over a year old her Mom who is very observant noticed her toenails turned brown and when she started walking she was not walking flat but rather on the sides of her feet. Her Mom was concerned as she developed eczema type of lesions under her feet, and so their journey began with Smile Foundation and Tygerberg Hospital, a journey filled with joyful moments as well as emotionally taxing moments.
The diagnosis was a difficult one and there was so many medical staff that tried to assist them through this process which they are eternally grateful for the patience exerted during this process.
She has been treated for the CHILD nevus a distinct skin disorder. This is characterized by an inflammatory nevus showing a strikingly unilateral arrangement and it has been also given various names eg verruciform xanthoma. This syndrome is a type of birthmark in which there is an overgrowth of one or more components of the epidermis or outer layer of skin. Normally it is variable, inflamed and covered by waxy, yellowish scales it is usually either strictly on one side.
An epidermal nevus ( plural nevi ) is an abnormal, non- cancerous patch of skin caused by an overgrowth of cells in the outermost layer of skin, it is seen either at birth or in early childhood as in Claire’s case. As the patient ages, the nevi become thicker and darker and develop wart like ( verrucous ) appearance.
Patient and family’s Journey
Claire and her Mom Sue Ellen have been through so much during her journey since almost birth with Smile and they are both very thankful and so appreciative of all the many people that have been attending to them since the beginning until now. There has been great support to them as well as care and interest shown consistently.
As Sue Ellen has said Claire was born a healthy bonny bright eyed baby and within a year things changed as the lesions on her feet turned a bright red/ brown colour and it became painful , after her diagnosis and as she grew older she had difficulty walking as it was painful she later began to walk on the side of her feet and could only wear takkies and soft shoes.
Her lesions become warm and it oozes mostly but she has to take care of it all the time in order to keep it dry because as soon as it becomes wet, it is prone to infections and become painful.
Patient has been part of several Smile Weeks and there has been a remarkable improvement. Her left hand and arms are also affected, and this has caused some very sad moments at school.
Claire has experienced some very bad ridicule over the years and during 2023 she was bullied and came home with a blue eye and scars , children called her an alien and scared to have her near them , Mom was forced to address the problem at the school as this had become a serious matter. Mom took the necessary steps and she managed to get Claire into another school during the middle of the year she was accepted at Stratford Primary school and Claire is now in Grade 3 and she is much better and has adapted and fitted in well. The principal and teachers are aware of her diagnosis and thusfar they have been very sensitive and have been very supportive.
Claire started off the new academic year in hospital for yet another procedure which entailed shave excision left heel & excision nervus left hand and this has been successful , which means she has to be in a wheelchair and her first school day in Grade 3 will be in a wheel chair, but she is used to this and is happy to go to school.
Looking ahead
Claire and her Mom Sue Ellen live with her Aunt and they have always been comfortable and Mom has given up her job in order to care for Claire in the best possible way. Claire is easy going and they are always so positive and have a positive outlook for the future despite the challenges. They have never hidden the operations and all the various hurdles they have had to overcome, and they will press on with the help of the surgical staff and Smile Foundation for which they are eternally grateful. Claire always loves all the spoils and has a collection of Smile branded items of which she is very proud.