Meet Larike Grix

Larike Grix was born on the 21^st of May 2013, at Medi-Clinic Nelspruit. She weighed a full 3,08kg and measured 51cm. Initial APGAR and other readings confirmed a healthy baby. The happiest day for any new parents! However, poor sucking and hypotonia got her admitted to NICU shortly thereafter and our long road ahead started. Following two and a half weeks in ICU, Larike was transferred to Unitas, Pretoria under the watchful eye of Dr MM Lippert. By this time, we were exhausted physically and emotionally. Following her first examination Dr Lippert suspected that she may have a rare syndrome named Prader-Willi. Following three days in Unitas, Larike got discharged and we could take our baby girl home for the first time. At that point in time, feeding was one of our biggest challenges, and we quickly developed numerous techniques to improve her sucking.

During her first six months at home she made steady progress. The weak sucking improved at the age of two months, where after our biggest challenge became her hypotonia. At the age of six months she could keep her head steady without any assistance. During this time Larike had her follow up at Dr Lippert and we were handed the test results which confirmed that Larike has PWS. We were devastated as we did not know what to expect and although we knew from her first examination that it might be PWS, we hoped Dr Lippert's initial diagnosis was wrong. Immediately our research went into overdrive. While we did some initial research when Dr Lippert suspected PWS, we now started searching everything we could get our hands on related to PWS on the internet. Perhaps, one of our biggest mistakes was believing everything we researched on the internet as we quickly realised Larike is, as any other child, unique. During this examination, Dr Lippert referred us to Dr Van Dyk, an endocrinologist who practices from Little Company of Mary Hospital in Pretoria.

At the age of seven months, Larike's interaction with us and her surroundings improved, she smiled often and could hold her own bottle. When Larike turned eight months, we visited Dr Van Dyk who prescribed Growth Hormone Treatment in the form of Humatrope. Larike was able to sit, unassisted at the age of nine months. Although we believe the growth hormone made a noticeable difference, we knew by then that we had to make certain changes and that we are going to need more assistance and support than the small town we resided in (Lydenburg, Mpumalanga) could offer us. We then made the decision to relocate, with the primary objective of being closer to doctors, occupational therapists, physiotherapists, dieticians etc.

We subsequently moved to Potchefstroom during April of 2014 being some 200 km closer to the said medical practitioners. By 14 months, with the assistance of numerous physiotherapists, occupational therapists, Growth Hormone Treatment and other medical interventions, Larike was able to crawl about. During this time, Larike had scheduled appointments at various practitioners including physiotherapists (twice weekly), occupational therapists (weekly) and daily growth hormone injections (three monthly follow-ups at the endocrinologist). At the age of 18 months, Larike started pulling herself up against the furniture, working her way around the house, slowly building her confidence to one day take that big, unassisted step!

Larike started nursery school in January 2015, in an attempt to develop and improve her social skills. She is a fun loving child between her friends and enjoys the school and friends a lot. Around the age of 20 months, we noticed a peculiar occurrence during, what seemed to be predominantly in the mornings, Larike rapidly losing control of her body for a split second and then revives and continues as if nothing has happened. Initially we thought this was only as a result of not woken up entirely, however after some research we found that this may be quite a serious condition related to epilepsy. A visit to Dr Lippert and a few tests later, revealed that Larike has a condition called "Cataplexy", that according to Dr Lippert is a rare case for 'n child with PWS, but which she will most likely outgrow. At Larike's school she attends 'Kinderkinetika' to help develop her gross motor skills, Smart-Brain to assist with general brain development and the school has services for regular eye and ear tests.

It was during some of these tests that the audiologist noticed some abnormalities pertaining to Larike's hearing and referred us to an Ear, Nose and Throat Specialist, Dr Tiedt. Four days later, grommets were installed in Larike's ears to improve drainage and her subsequent hearing, and these made a valuable difference! To ensure Larike has all the advantage she requires to walk unassisted, we approached an orthopaedic specialist who examined Larike's feet. He noticed Larike's ankles tilting inwards whilst trying to walk, and suggested custom made inner soles to assist her ankles. Larike is currently in the process of trailing these!

Apart from the various tests, therapies and procedures to ensure Larike has an advantage and the best opportunities in life, she is a healthy, loving and unique little girl whom we love with everything in us!

Currently Larike continuous to go to school and loves her friends and teachers very much! We're continuing with the daily injection of the Growth Hormone Treatment and see the occupational therapist bi-weekly. Larike also started with swimming lessons and is progressing well!

Furthermore, we as her parents came to the realisation that we need to accept Larike as the unique individual that she is, and will be. All that we can do is to ensure she will live her life to the fullest, and to help develop a lifestyle that will benefit her in every way possible.

What we learned so far, is to trust your instincts, and accept others' support. Don't try to take on this adventure on your own; you will be surprised what a little support can do for you.

With regards from Quintin, Liezl and Larike Grix, Potchefstroom.