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Fundraising for Amikhe van Rooyen – Acute Disseminated Encephalomyelitis (ADEM)

Amikhe van Rooyen

Amikhe`s story:

“Amikhe van Rooyen was born on 8 November 2016 as healthy as can be, no illness or disability. At 11 months Amikhe went for her measles vaccination, a few days later she fell ill. Her school called me and told me that she has a fever of 42 degrees Celsius. Her father and myself rushed to the school to take her to hospital. We arrived at a hospital (we would prefer not to share the name), they assisted us and took Ami to the PICU Ward.

They told us Ami is getting fever seizures which lead to a shortage of oxygen into her brain. She went to sleep that night, the next morning by 11 she has still not woken up. I called a doctor and told him that Ami never sleeps that long, something is wrong and that they should start investigating. They did a few tests including an EEG and MRI. On the tests the doctor picked up that Ami has brain damage. The doctors explained to me that they will have to sedate her and transfer her to another hospital, because there is nothing else that they can do to help Ami.

She was transferred to Busamed hospital where Doctor Ponde treated her. After numerous tests he diagnosed Ami with ADEM. Google explains it like this: Acute disseminated encephalomyelitis (ADEM) is characterized by a brief but widespread attack of inflammation in the brain and spinal cord that damages myelin – the protective covering of nerve fibers. ADEM often follows viral or bacterial infections, or less often, vaccination for measles, mumps, or rubella.

Ami was in PICU for about a month, constantly monitored by doctors and nurses. We went through so many ups and downs, good days and bad days, positive feedback and sometimes hearing somethings we never hoped to hear, but Ami pulled through. She was transferred to Netcare Auckland Park rehabilitation hospital on her first birthday. The brain damage caused her to lose use of her tongue muscle completely, she couldn’t crawl, she couldn’t sit up by herself, etc. The staff at Netcare had to teach a one year old baby that was back on being like a two month old baby. She had wonderful staff helping and taking care of her.

After a month at the rehabilitation hospital they had to give Ami a PEG (temporary) to be able to still take in nutrition, fluids e.g. water and milk and medicine. The first operation went great. We were hopeful that Ami will recover and that they can remove the PEG, but unfortunately they had to replace it with a Mickey button (permanent) that will last longer. Unfortunately the doctor that did the operation placed the Mickey button incorrectly into Ami’s stomach and she was busy drowning from the inside. They only realized this a day later and she had to go in for another operation. Ami was rushed to the OR for an emergency operation. They cut her stomach open, removed all her organs, cleaned them and put them back into her body. Unfortunately this was not great for Ami’s progress. Again, a lot of ups and downs, good days and bad, BUT Ami pulled through. After 4 months in the rehabilitation hospital Ami went home.

Luckily Ami has always been on good medical aid, but unfortunately the savings still gets depleted quickly. There are also additional weekly, monthly and if and when needed, costs for medicine, special equipment e.g. car seat etc.

Ami’s grandmother has taken care of her since she has been allowed to go home, but I would love to send Ami to a school to help her with stimulation, etc.”

Please open your heart to Ami and support our fundraising efforts for her medication, Speech Therapy, Occupational Therapy, Physiotherapy, and Chiro Therapy . All proceeds from her “Strength to Strength” bracelets are donated towards her ongoing medical care and expenses.

Together we CAN make a difference and help a child in need, one bracelet at a time!

Alternatively, please consider a donation; any and all donations welcome. REF: Amikhe van Rooyen.

Fundraising for Amikhe van Rooyen

Strength to Strength Bracelets

The Strength to Strength Bracelets” for Amikhe consist of white wooden beads with crystal, silver and diamante fillers, or silver electroplated beads.

Bracelet options:
1. White with diamante tree of life charm
2. Silver electroplated beads with diamante balls
3. White with silver fillers no charm

To place an order, contact the agent in your area or shop online.

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