HAMISH Guihot is a local Narooma two-year-old boy who has recently been diagnosed with a rare type of epilepsy.
Hamish continues to have tests at Randwick Hospital with his parents Mel and Grant going back and forth.
He is on seven different drugs and with no concession, his parents are finding it very challenging to make ends meet.
Now friends are urging the Narooma community to wear bright colours for Hamish this Friday and to donate in one the tins around town.
Hamish’s mother Mel said that six months ago her world was turned upside down when her precious son was diagnosed with epilepsy after suffering a number of fits.
“Hamish was put on strong medication to help control his seizure and for a while a family adjusted and life fell into place,” she said.
That was before one daily seizure turned into many seizures and on their worst day he suffered 34.
After many consultations with neurologists and specialists and test after test there is still no diagnosis for the rare genetic disease that is slowly taking away his motor skills, sight, development, muscle control, memories and speech.
“On his bad days he goes into a state of status epilepticus and each time we pray that this is not the time he can no longer talk, or walk, or recognise us!” mum Mel said.
“He is on six different hard drugs some of which are adult doses,” she said.
Just recently little Hamish caught a virus that put his body into a state of shock that started to shut down his body because of the strong medication he takes.
“He has his good days, and he has his bad days but at the moment his good days are becoming few and far between, but he is a fighter,” Mel said.
Mel went on to say how special the little town of Narooma is and the support that she has received means more than words can describe.
“The constant support, the phone calls, the buckets around our little shops, the fundraising, and the ten, twenty, one hundred dollars that pop up in our bank account mean so much more then I have words for.
“Most of you, we don’t know and yet our son has touched so many of you. “We are eternally grateful for the huge amount you have done for us,” Mel said.
If you would like to help out this family and little champ Hamish, you can go to St George Bank and donate into BSB 112-879, account 410524659 and account name Grant Guihot.
Donations can also be made at tins Rapley’s Midtown Meats, the Narooma Plaza Pharmacy or Narooma Ice-Creamery, or contact Kylie on 0427 764 940.
More from Hamish's mum:
Six months ago my world was turned upside down. My precious and perfect two year old son started fitting.
Three seizures later we received a then heartbreaking diagnosis, epilepsy. Hamish was put on a strong medication to help control his seizures. Our family adjusted, life fell back into place.
My Hamish was trooping through this condition, then came the curve ball. One seizure a day turned into two, two into five, five into ten. Our first bad day was a total of 34.
Three transfers to Randwick Children’s hospital later, 34 seizures is sadly not so bad.
Neurologist after neurologist, specialist after specialist, test after test, and a seven straight week stay we still have no diagnosis for what is going on with our little guy.
Hamish has a rare genetic disease that is slowly stealing his motor skills, sight, development, muscle control, memories, speech.
And six days ago he caught a virus, because of the medication he is on the virus hit him hard.
Within 10 minutes of finding out he was sick, my little man went into a state of shock and his body started to quickly shut down on him.