Dylan was born with a swollen heart, his middle valve is swollen and keeps growing, he was born with a condition that was diagnosed on the basis that I had diabetes "type 1" and we where told his heart would subside and heal itself in 4 to 6 months, in that time he was in NICU for 3 weeks then he was diagnosed with Colic and was in and out of hospital for several conditions and sicknesses and a lot of test ext.
6 months came and we still didn't see a change, they gave him till 8 months then till a year old and then again at 15 months old we still didn't see a change and his heart was not subsiding as the Peadeatric heart cardiologist expected it to, in the meantime he was still not walking and had delayed milestones with almost everything he did. the pediatric heart cardiologist Had advised us he wasn't sure what's happening with Dylan and he had consulted with a few DRs via email and Dylan had to go to JHB to a specialist for a second opinion last year In March. Dylan started walking a week before we left to see the second Dr for more test which he confirmed Dylan did infact have another disease and had been misdiagnosed and has a heart disease called "infant HcM" and they told us that there is only one Professor in South Africa that studied what Dylan had and that there is not much more we can do as he will either need surgery when he is older or it will be sudden death or can have multiple heart attacks, everything was turned upside down from there, we have been left in the dark and waited for the Dr in Durban to contact us regarding the JHB Drs opinion, eventually I had to call him a month after the appointment in JHB cause no one was contacting us regarding a way toward. In the mean time, Dylan suffers with drag foot, his hip is out of place, he gets cramps in his arm, wakes up about 14 x a night from pain, his ears can't be done and he can't be circumcised nor have his tongue tie done as he is unfit for surgery and can die under anesthetic! He couldn't go to school till he turned 2. He is now in school and we take it day by day. When I got hold of Manichkam his Dr, he told me he had done everything he can for Dylan, ended in a huge argument cause he misdiagnosed Dylan and then he was just uninterested in assisting us further, I eventually went out my way to get hold of the only other Dr in Durban from The government hospital, to our surprise we find out he had private practice at Ethekweni heart hospital and we went for a 3rd opinion and he confirmed what the he has is infact HCM Our new peadiatric heart cardiologist also put us in contact with the Professor Brink from CApe town that is the only person in SA that studies his condition, basically we have been waiting since last year for this Professor to get back to us to see if Dylan is a candidate that he will see regarding his condition and he has confirmed today 30.03.2017 that he will see us and we will be going to Cape Town soon, It's been a very hard 31 months of suffering for all of us. We have had to increase our medical aid which alone is costing us over R5000pm and most of the time we have to pay for things cash just to save our savings for the emergencies ext. we now need funding and hoping and praying this works, everything can help and we would appreciate all the assistance we can get at this point to assist us with our trip to Capetown, we are going to need accommodation, flights, medical bills ext and with today's cost of living we are finding it hard to make ends meet.