Good Samaritans in Mogale City and beyond are scrambling to help raise funds for BackaBuddy beneficiary and Rant-En-Dal resident, Ashlynn Kapp, 4, who is suffering from a rare condition affecting her tongue.

Her mom Jodie explained that Ashlynn suffers from the congenital disease lymphangioma.

“This is called lymphatic malformation. Hers is affecting her tongue. After many hospital and doctor’s visits, a biopsy confirmed it was lymphangioma. The lymphatic malformation was burnt (cauterised) during the biopsy but it was back within three weeks.

We have seen a plastic surgeon about treatment options for little Ashlynn, but the surgeon has never treated lymphatic malformation of the tongue, and treatment would’ve been exploratory. We have been unable to find a specialist who has experience in treating this rare condition of the tongue. We have also tried many natural remedies, without any success.”

The Kapps joined an NGO in Sandton, Rare Diseases South Africa but they did not have anyone on their database with this condition either.

“Unfortunately, the lymphangioma worsens as she ages and spreads to the back of her tongue. Our greatest fear is that it will spread to her neck area.”

By some miracle, Jodi said she recently read an article about another little girl with a similar condition who received treatment.

“We had our appointment with the specialist on August 23 and he is very confident that he can help her.”

Jodi said the treatment entails surgically removing a middle section from her tongue that won’t affect the movement, sensation or taste, “… to take out most of the affected part and reduce the size of her tongue. Sclerotherapy will be administered to the sections where surgery is not possible, which entails injecting bleomycin into the affected area which should prevent the lymphangioma from reappearing.

He said generally the surgery is quick and uncomplicated, and she should recover quickly. He would like her to stay in hospital for one night after the procedure because she is so young. There might be a small chance that she would need another dose of sclerotherapy at a later stage in areas where the lymphangioma might reappear.”

The quotes from the service providers, however, total more than R52k and although the initial appointment was sponsored the family does not have a medical aid to cover the procedures. So far, more than R38 100 have been donated.

Due to Covid-19 we closed our business and lost our medical aid. We have not been in a position to get medical aid that would cover any treatments or hospital stays for her either. When she had flare-ups we were able to have her treated by a local doctor, but this only treated the symptoms, and the relief was often short-lived.”

The funds from the BackaBuddy campaign will be used for Ashlynn’s treatment, surgical procedure and hospital stay. The family has a Facebook page which will keep you updated on Ashlynn’s progress.