- By: Jade Schenckenberg
- Short URL: https://www.backabuddy.co.za/jade-schenckenberg-5692796782214430894
- Date Created: 31 August 2023
R 50 000
This is Miliahs story in short;
From 3 weeks old i started noticing that there were issues with her health. She would throw up breast milk, formula no matter how it was given to her. Miliah was also very 'floppy'.
Miiahs first hospitalisation was at 3 and a half weeks old, where they put her on nasal tube feeds and started some testing. A gastroscopy was done this showed she had laryngamalcia and they had done a CT scan as well as an MRI. Miliahs Mylanation in the brain had not begun. From there she was transferred via Ambulance to another hospital. It was there that they had her on continuous nasal tube feeds. After a month and a bit in hospital we were sent home with specialised formula.
Miliah was still throwing up no matter what medications or formula they would put her on nothing would change. She was diagnosed with Reflux and Dysmotility.
As she grew older more medical health concerns arised. She started therapies (Speech, OT, PT) Miliah grew stronger physically which was a Godsend. Miliah started showing signs of neurological issues, besides not reaching her milestones, she was starting to self harm herself at a very young age. And the seizures started.
A neurologist put her on risperdal and she was then diagnosed with developmental delay,intellectual delay, behavioural issues and Absent seizures. Epilum was given for the seizures.
Miliah was then sent to the Ortho has her feet were 'skew' thus inabling her to walk. Correctional night time boots were prescribed - which she wore for about a year.
This did not help her feet which resulted her in having a major operation on both feet a year later as she had Metatarsus Adductus (cutting all ten bones, placing them correctly and having her in casts for months as well as being wheelchair bound)
From a young age Miliah suffered from being continuously sick, being hospitalised for infections, upper respiratory infections and diarrhea. This was then said that she had chronic sinusitus and chronic diarrhea. She had her tonsils and adenoids to try relieve some of the symptoms.
Miliah was sent to a geneticist twice and only on the second visit did they do bloods only to find out she has a rare genetic chromosome disorder 16q11.2q21 duplication. As there is not much information regarding this specific diorder they discharged us from the genetic clinic with very little information and help.
Miliah was then sent to a cardiologist and with the two appointments shes had they found she had Patent Ductus Arteriosus, slight heart murmur and HCM.
The pulmonologist visit had given us a direction in many allergies miliah had been suffering from - gluten,dairy,soya,nuts,fish,cats,dogs,grass,pollen and dust.
After seeing a chiropractor and doing biokinetic sessions it wasfound miliah has Ankle Valgus Deformity, Lordosis, Hypermobility, Flat Feet and Left Unilateral Hypertonia
Over the recent months Miliah saw an opthomologist and the outcome of that was that she was far sighted and had alternating intermittant exotrpia
Also we had flown to Durban to see a gastroenterologist and after having many many blood tests, bowel prep, gastroscopy,colonoscopy and biopsies of some internal organs, Miliah has all of her internal organs inflamed (oesophagus, colon,liver, whole digestive system) They cant tell me why this is happening only that it is whats happening. Theyve put her on more chronic medication - Pentasa, Diaclin and Montelukast. Miliah also has Fatty Liver Syndrome.
On the 25th August 23 Miliah saw a neurologist and had an EEG done this showed that her brain slows down more frequently than just when shes having a seizure which is worrisome. Dr has put her on Tegretol and risperdal. And will monitor her every 3 months.
Any donations are much appreciated, all funds raised go towards outstanding medical bills, upcoming specialist visits, OT, Speech, PT and Behavioural therapy, specialised dietary requirements, medication (chronic)
Throughout all this Miliah still has a happy outlook on life, she is always smiling and is determined and strong willed. She can light up the room with her smile and even though she cant verbally express herself she finds ways to show you exactly what she wants and needs.