Cure Huntington's Disease (HD) with IVF & PGD
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Prepare yourself for a long read.
Huntington's Disease (HD) is an inherited, genetic disorder from a defective gene that attacks nerve cells in the brain resulting in them to break down over time. As it is hereditary if a parent has the gene, each child has a genetic 50/50 chance of inheriting it or escaping it.
Symptoms include forms of nervous activity like fidgeting, minor twitching in fingers and toes; excessive restlessness; some clumsiness; slight alterations in handwriting; and
minor difficulty with normal daily physical skills like driving. Along with physical symptoms, there are often mental problems as well such as; short-term memory loss; less ability to organise routine tasks or to cope with new situations; periods of depression, apathy and irritability; and impulsiveness.
The best day a couple will have is (usually) the day they find out they will be parents. Nothing fills you with more pride or joy nothing in life gives you more purpose. You instantly become overjoyed and start planning your future as a family you imagine the holiday trips you will go on, the experiences you will have life becomes more then you expected and it's amazing. But.. what happens when your world turns upside down and you are forced to choose between having the child you have always wanted and saying goodbye.
This is the hard side of HD. At 16 weeks gestation, we found out our child had Huntington's Disease one of the world's cruelest diseases, a debilitating illness that would see our child in the prime of his life stripped of his motor functions stripped of his dignity and battling for life.
So on July 3rd, 2019, we made the hardest decision any parent will ever have to make, to terminate and say goodbye to our baby boy. He was born at 17 weeks, 120 grams and 17.5 centimeters. Three weeks on the tears haven't settled, the heartache has not faded but our anger has risen because we shouldn't have had to do this there is a way to prevent this. Not only prevent this but in only one generation almost eradicate the disease completely! Unfortunately IVF & Genetic Testing for most it's out of reach at $13,000+ upfront cost, not to mention if the cycle doesn't work - add another 10k upfront to your expenses per cycle. Yes medicare does help but it's not enough.
The government complains about welfare expenses, these pensions and disability support services for people who for example have Huntington's Disease (and other genetic problems), make their life livable - yes. But the cost to care for an individual with HD outweighs the cost of IVF massively. If couples were provided a chance to start a family without the repercussions of this disease through subsidized IVF & PGD, the world would be a better place. #curehdwithpgd
We said goodbye to our son, to save him a life of misery. HD is prominent in my family, and I couldn't bear to bring another human in this world that would have to succumb to such a horrible disease.
Huntington's Victoria have also started a petition for this cause
Information used is based on personal experience, Google searches and the Association's publication Huntington's Disease. Originally written by Dennis H. Phillips, Ph.D. and first published in 1981, it has been frequently revised and republished since then. The current edition was published in 2001. (Australian Huntington's Disease Association (NSW) Inc. Huntington's Disease West Ryde, 2001.)
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