About Matthew
All underlined words are hyperlinked
- Born 24 August 2005 in Pretoria, South Africa
- Feeding difficulties resulted in poor weight gain and failure to thrive
- 12 November 2005. Start of sporadic episodes of severe rectal bleeding
- 14 November 2005. VSD (ventricular septal defect) discovered by paediatrician - referred to paediatric cardiologist
- ECG (electrocardiogram) and sonar confirmed heart failure
- Extensive testing was done to determine the cause of the rectal bleeding:
* 5 December 2005. Admitted for Meckel's Diverticulum scan and observation.
Additionally, a PH probe test was done which confirmed
GORD (gastro-oesophagal reflux disease)
* 14 December 2005. Admitted for colonoscopy
- result: diagnosed with food protein induced enterocolitis
- Treatment involved feeding Neocate elemental formula. Within days the bleeding stopped and Matthew started gaining weight slowly
- 23 January 2006. VSD repair surgery
- Operation was followed by poor sucking and swallowing which necessitated nasogastric tube feeding
- Due to the very high cost of Neocate (R3500.00/month), he was put on the slightly cheaper Nutramigen
- 1 July 2006. Start of myoclonic epilepsy. Referred to a paediatric neurologist
- 5 July 2006. Diagnosed with West syndrome. Failed to respond to treatment, and seizures became more frequent
- 22 November 2006. Admitted for bronchio pneumonia. This was the first of many admissions for pneumonia
- During this time, intensive testing was done to determine the cause of the myoclonic seizures. Result - diagnosed with INCL (Infantile Neuronal Ceroid Lipofuscinosis) or Batten disease in short
- July 2007. The epilepsy was treated successfully. No more seizures!
- Feeding difficulties and poor weight gain continued due to GORD. This necessitated a laparoscopic Nissen fundoplication and insertion of a MIC-KEY gastrostomy tube on 4 February 2008
- His quality of life improved dramatically due to this
- Slow progressive weight gain was achieved with Peptamen Junior
- HIGHLIGHT! July 2008. Matthew started to crawl. (Watch the video)
- HIGHLIGHT! 30 August 2008. Reach for a dream (kindly sponsored by Jetline Centurion) hosted Matthew's 3rd birthday party
- 18 November 2008. Matthew appeared in Beeld (Lees die berig)
- 4 December 2008. Matthew appeared in You/Huisgenoot (Read the article/Lees die berig)
- September 2009. Diagnosed with mitochondrial disease
- HIGHLIGHT! 12 September 2009. Matthew started climbing onto the furniture unaided. (Watch the video)
- To date, Matthew has been receiving ongoing physio and occupational therapy known as maintenance therapy
- 22 January 2010. DAMP procedure (achilles tendon lengthening and tendon transfer) performed on both feet to remedy dropfoot
- He was in casts for 6 weeks after this surgery and now wears splints
- 2010 marked the return of his seizures and the start of severe deterioration, including his sight
- Since June 2010 all oral feeds have been stopped. He is now fed exclusively via the gastrostomy tube
- Numerous medications were tried to stop the seizures, but to no avail. During the latter part of 2010, the epilepsy was out of control and Matthew was really suffering
- 12 October 2010. Ketogenic diet was started as a last resort to control seizures
- Thanks to the Ketogenic diet, since mid-January 2011 there has been a marked decrease in the number of seizures and a dramatic improvement in his quality of life.
- Matthew can no longer crawl or climb.
- To date, Matthew has been admitted to hospital 29 times