One-year-old with uncontrollable epilepsy needs urgent help
Jasmijn Duvenhage, a little one-year-old girl from Die Wilgers, Pretoria, was diagnosed with temporal lobe epilepsy at only 4 months old, after several tests, including an EEG test that measures electrical activity in the brain.
Jasmijn has a rare genetic condition that causes difficulty to control, severe epilepsy, slow development, and low muscle tone.
After starting therapy for temporal lobe epilepsy, Jasmijn’s condition unfortunately worsened, and she was diagnosed with West syndrome, for which she had received a prolonged course of extremely expensive steroid therapy.
This was not covered by the family’s medical aid in 2021.
“By Jesus’ Mercy and Grace, she came out of West syndrome, a miracle that very few children live to tell about. Unfortunately, Jasmijn developed several forms of horrifying epilepsy ranging from mild episodes to absolutely life-threatening episodes. This happened several times a day.” – say Jasmijn’s parents
Nadia, Jasmijn’s mom, has not been able to trust Jasmijn’s care into the hands of another healthcare provider yet, as Jasmijn has an extremely complex medication and feeding regime, including the ketogenic diet, which can be 100% life-threatening if administered incorrectly.
Nadia thus forms part of Jasmijn’s therapeutic team and had to stop working in order to be available for her daughter’s care. This places additional financial strain on the family.
To date, Jasmijn has feeble muscle tone, she cannot sit up, turn over, or crawl. She also has trouble moving her head, which necessitates 24-hour monitoring as she also has trouble swallowing her secretions, which has led to several choking episodes with aspiration pneumonia and lung collapses, requiring non-invasive ventilation and admission to paediatric ICU. This is all even despite the family’s best attempts to manage and prevent these episodes with physiotherapy and suctioning at home. With her severe developmental delays, she doesn’t yet smile and does not always react to people around her.
To give Jasmijn the best care, her family has spent their entire savings and exhausted their medical aid to cover the costs of her medication and purchases such as a wheelchair, bathing equipment, anti-epileptic drugs, rehab sessions, hypoallergenic baby formula and now the ketogenic diet, as well as a special needs car seat.
The parents hope that with the right therapy, Jasmijn will still have a chance at a normal life.
Uncontrolled epilepsy remains the problem: every time she has a seizure, it may damage her brain and delay her development further. She is currently on 5 anti-epileptic drugs (amongst others) but her epilepsy is still not under control. The family is doing everything they can to ensure the best possible outcome for Jasmijn.
In need of urgent financial assistance to help Jasmijn with her medical condition, the Duvenhage family have launched a crowdfunding campaign on BackaBuddy to appeal to the public for much-needed support.
Since June 2022, Jasmijn has also been in and out of several paediatric ICUs, battling various infections, due to her poor immune system. This brave little girl even had to spend Christmas 2022 and new year 2023 in the paediatric ICU.
The parents and doctors are hoping to get her home soon though. Currently, she is receiving 24-hour continuous feeds and will have to be managed on non-invasive ventilation at home until her muscle tone improves enough for her to breathe well on her own.
To date, approximately R1111 000 has been raised from 47 incredible donors, towards their fundraising target of R250 000
“We are doing everything we can do to make sure that Jasmijn gets the correct medical care. All contributions towards our BackaBuddy campaign will be used to ensure that Jasmijn receives the best therapy.”- say Jasmijn’s parents
Support Jasmijn by donating to her campaign:
https://www.backabuddy.co.za/jasmijn-duvenhage
Alternatively, donate via Snapscan
https://pos.snapscan.io/qr/JasmijnDuvenhage
For more information, please contact Zane Groenewald- 082 602 0735 – [email protected]