Michelle Le Roux is a single mommy of Milan Dale (2 yr. and 9 months), who was diagnosed with a rare genetic condition called Prader-Willi Syndrome (PWS) as well as Scoliosis. Scoliosis is commonly found in people with PWS.
One of the effects of PWS is low or extremely low muscle tone. Usually, kids will be started on Growth Hormone Treatment from a very young age. Milan had to visit the sleep lab for a very thorough sleep study and the doctors decided that his tonsils and adenoids had to be removed. A while after the surgery, he went for another sleep study and the results came out a few weeks ago – at last he is ready to start Growth Hormone Treatment! GHT is not covered under medical aid and is ridiculously expensive.
Neuromuscular Scoliosis with a 53 degree C-curve was diagnosed at 16 months. This is again caused by the low muscle tone.
While waiting for the decision of GHT, Michelle tried everything in her power to keep Milan’s curve from progressing.
With the first round of Mehta casting, Milan was 20 months old. The cast was removed early due to medical reasons. The second round of Mehta casting was applied at 21 months old. The full 8-week course was completed with no improvement at all.
Michelle started looking for other treatment options to reduce the curve of his spine. Milan started with physiotherapy, Schroth therapy, swimming therapy and chiropractic sessions. Even with all the extra exercise to strengthen his core,the scoliosis progressed.
She promised herself to never stop looking for a solution for her little scoliosis warrior. She contacted various institutions outside South Africa for possible non-invasive treatment options:
Prof. Ahmet Alanay at Comprehensive Spine Center in Istanbul recommended casting to halt the progression until he is at a suitable age for spinal fusion surgery to straighten his spine.
National Scoliosis Center in Virginia, USA recommended Dr Malcolm Freedman in Cape Town for an RSC Brace. Michelle and Milan had a very positive consultation with Dr Freedman where he explained that Milan is the perfect candidate for the RSC brace, and was very excited to be a part of Milan’s bright future. Dr Freedman also explained that the cost of the brace was R50 000! The worst of all is that Milan will need a new brace every time he grows about 10cm.
A crowdfunding campaign was started and by grace alone, they have reached the R50 000 target and Milan’s brace was ordered. He is doing great in the brace and they are eagerly awaiting the next appointment with Dr Freedman to see what progress he has made.
Dr Freedman was very happy to hear that Milan was awaiting the results to start Growth Hormone Treatment. He stated that the Growth Hormone will help strengthen the muscles around his spine, while also helping the spine, and his whole body, grow.
Milan has recently started with his Growth Hormone Treatment GHT – starting with a low dose and increasing as per his endocrinologist. The cost of GHT pens are quite extreme and treatment for a month will start from about R3000. As Milan’s dose gets increased, the cost will increase to about R6000 a month.
Together with your help we can make a significant difference in Milan`s life. Together we can change his world, one bracelet at a time!
Fundraising for Milan Dale
Mighty Angel Bracelets for Milan; consisting of coral wooden beads with crystals – and a Hope awareness ribbon, a cross & sword, and a letter “M” charm. The Men`s bracelet consist of coral wooden beads and a Hope charm.
“Angels descending, bring from above, echoes of mercy, whispers of love”