THE teen who recently recovered from CRPS, a painful condition described as worse than childbirth, has finally been given the opportunity to live a somewhat normal life, but this does not come without a cost – literally and figuratively.
Since Heather Botha (15) returned from the US, where she received treatment for her condition for almost a year, things have been going exceptionally well.
Where even the sound of the rain outside would make her wheelchair-bound body hurt, she has now recovered to such an extent that she is able to walk, run, ride a bike and even go to school, things that she was completely unable to do for more than three years.
However, the one thing that Heather is still struggling with, is eating, as she developed gastroparesis or “paralysed stomach,” a side effect of complex regional pain syndrome.
This means that Heather cannot ingest solid foods and is dependent on a feeding tube that goes through her nose and bypasses her stomach into her jejunum – which is the second part of the small intestine.
Heather’s mother, Hayleigh, who has been with her daughter every step of the way, said that Heather suffers immensely with this condition and anything that she attempts to eat, would be rejected by her body.
“Since being back home in South Africa, she has made slight improvements. She can now take in a few things orally without vomiting but these are only certain things in tiny quantities, such as a custard, baby food, soft porridge and mash,” Hayleigh explained.
“These are all in very small quantities and by no means provide enough calories and nutrients for an active teenage girl.
“Anything that is not completely soft, will still be rejected by her body. She still takes the bulk of her nutrition through her feeding tube and uses a specialised formula called, Nestlé Peptamin.”
According to Hayleigh, this formula has already been partially digested since it doesn’t enter the stomach, which means that it has already gone through most of the digestive processes when it enters the jejunum.
To add to the family’s heap of problems, the medical aid has decided not to pay for Heather’s feeding tube.
“The tube is crucial for her survival.
“She uses a pump in a bag to pump small quantities into the small intestine throughout the day and night.
“She uses over one tin a day and the costs amount to close to R1 000 a day. This does not even include the price of the attachments for her tube and appropriate tape and syringes,” Hayleigh explained.
“Our medical team has applied to our medical aid twice for them to cover these costs as it is crucial for her survival.
“Without this specialised food she would not survive. Unfortunately, the medical aid has rejected the claim on the grounds that she is not malnourished. She is not malnourished because the special feed provides her with the appropriate amount of nutrients a day but if we had to stop giving it to her completely she would become malnourished,” Hayleigh said.
“Since returning to South Africa in December, we have spent R100 000 out of our pockets just feeding her. This is after accumulating so much debt to take her to US for treatment but we do it out of love for our daughter. She needs this feeding tube to survive.
“I am so ashamed of always asking people for money but what else can a mother do who wants the best for her daughter?
“We are an ordinary family of four currently on one salary and cannot afford to pay the extra R30 000 a month for her food but we are currently doing so yet will not be able to for much longer.
“We are appealing the decision with the medical aid and also making an application to state and other institutions but in the interim we still need to feed her daily.
“Any help in any way possible would mean so much.”
Anyone who would like to help Heather and her family can visit her page on BackaBuddy
:
https://www.backabuddy.co.za/champion/project/medical-aid-refuses-to-pay-for-our-tube-fe.
