We recently came across a Facebook post that we felt obligated to share and contact the parents. Here is what we found out about Ramona.
Ramona was born in 2013 via emergency caesarean due her mother developing pre-eclampsia and placental abruption. (Pre- eclampsia is a potentially dangerous pregnancy complication characterised by high blood pressure along with other symptoms. Placental abruption is a very serious pregnancy complication in which the placenta detaches from the womb (uterus)
From the very moment Ramona was born she has battled with her health. Her first weeks of life were not at home with her family but rather spending 40 days in the Special Care Nursery across 3 different hospitals.
Since then Ramona has developed allergies. To be specific, Ramona is FPIES to meat products, essentially she is vegetarian.
Food Protein-Induced Enterocolitis Syndrome aka FPIES is a type of food allergy affecting the gastrointestinal (GI) tract. Reaction to her allergies are extreme vomiting and diarrhoea causing quick onsets of dehydration which requires fluids and hospital stays that are usually 3 nights.
Her Battle Is Far From Over
Ramona is a beautiful 4-year-old girl. She may look healthy but beneath the surface, this courageous little girl is fighting and unimaginable illness. She has Epilepsy caused by focal cortical dysplasia: Ramona has two main dysplasic areas in her brain. (Dysplasia is malformation of the brain, which happens in utero very early in development)
What Caused This Form Of Epilepsy ?
“They have no idea what caused it but one thing we do know is that the type of epilepsy that Ramona battles can not be controlled by medication. The medication trials have only been effective for a short amount of time before they stop working again. She has tried 4 different medications in 2 years slowly going up to the maximum dose on each medication before changing to a new one”
What Type Of Seizures Does Ramona Have?
“The type of seizures Ramona has are called focal seizures (kind of like she just pauses in space then keeps going after its finished like nothing happened) . She also has drop seizures, they start out and she will lay herself down on the floor and zone out then over the next couple of days they get longer in time and happen more frequently, she will start doing continued actions like click her tongue or open and close her hands while laying down until they get to a point where she just drops”
Ramona Needs Surgery To Give Her Quality Of Life.
“Without this surgery her quality of life will slowly diminish from the damage her brain will sustain from the seizures”
Ramona will be having a lobotomy on the 11th of September 2018. ( a surgical operation involving incision into the lobe of the brain)
Needless to say this is a major surgery for such a young little girl. The surgery will take an estimated time of 10 hours. They will do an EEG directly on her brain with medical mesh covered in sensors to map her brain activity more accurately, then they will remove the 2 dysplasic zones of her brain.
What Is Ramona Like As A Person?
“She is smart and funny, her favourite things are anything to do with space or dinosaurs. favourite colour is blue”
How Does This Form Of Epilepsy Effect Ramona?
“Other than the risk of injury from falling, she gets extremely tired, once she even went limp and slept for over an hour afterwards. Her medication makes her angry and frustrated, gives her headaches, makes her forget what she is doing and sometimes she will forget what she’s saying halfway through saying it. It’s effected her schooling and education, she’s currently in 4 year old kindergarten but she is unable to attend properly due to hospital appointments or seizure days. She hasn’t many friends at school, not any that she can name”
How Does This Effect Your Family?
“The hardest thing a parent can do is watch their baby in pain and know there is absolutely nothing you can do to help. So many times I would just wrap my arms around her and cry while she was so exhausted from the seizures that she couldn’t move, speak or even keep her eyes open. I worry for her future and I am petrified of her going into surgery, but I know it’s the best thing for her and the only chance we have of kicking the epilepsy.”
What Can We Do To Help?
“We are doing this fundraiser to support the Clown Doctors who make the hospital stays at the royal children’s hospital a little less scary for Ramona and all the other children. The Clown Doctors are amazing group of volunteers who go to hospitals all over Australia to play with the kids while they are getting treatment, I can not count the times they have played with Ramona while she was scared, tired, bored or frustrated about being in her hospital bed. We are fundraising to fund more Clown Doctors to see more kids so that they can have the same experiences Ramona has had while she is in hospital.”
A group of Ramona’s family and friends will be shaving their heads so that Ramona doesn’t feel different when she has her hair shaved for surgery.
Every cent counts: If you would like to donate towards such an import cause, click on the link below to help make a difference to many children’s lives including Ramona’s!