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Niamh's Journey

Luke & Freyja's Story

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Luke & freyja

Luke

 
Luke Campbell Christian was born on 14th March 1997.

He was healthy & developing normally up until 3 mths of age when we noticed he was having mild seizures. By the age of 8mths Luke was seizing for 12hrs continuously & was regressing in his development, we were devastated he lost his amazing smile.

We spent most of his first 2yrs of life in hospital trying all of the medications & a special diet but he failed all of them, we were told we would have to "take him home continuously fitting or knocked out" which both would result in us losing him.

Amazingly a new drug had come from the US which Luke was put on among his countless others, his seizures became
less severe & fewer.
Luke is now almost 13yrs, he has a gastrostomy tube, has had a hip operation, has had a back operation to correct his
severe scoliosis & countless blood tests.

Luke 1

Luke is in a wheelchair, can not walk or talk, he is basically at a 3-4mths old stage developmentally but he has his smile back!!
Luke was undiagnosed for 12 years up until when his younger sister Freyja was at 12mths with MPEI.

We love Luke's amazing spirit, he has fought death many times & is a real little trooper.

We have been totally blessed to have him in our lives, he is my guardian angel!

Luke 3

Freyja

Freyja 3

Freyja Jane Hines was born on 27th March 2008.

She is my other special bub diagnosed with MPEI at around 12mths.

Freyja as Luke was a healthy baby until 5mths, when she also began having seizures. Neurologists & geneticists were
amazed that this was happening.
I knew the drill having been through this with Luke but little miss Freyja wanted to be different & would go blue
(stopped breathing) with her fits & would have to be bagged We nearly lost her countless times (another fighter).

I think one of the worst days was Freyja's 1st Christmas spent in hospital, it broke my heart, but she did get sung to
by the wiggles!!

Freyja 1

Freyja is on a lots of meds, was on the ketogenic diet which did help her for a while & currently she is doing quite well, although she too has lost her smile!

Freyja has a gastrostomy tube & we are just about to buy her a wheelchair as she hasn't much chance of walking & will not talk
(although we will not give up on her development through physiotherapy etc).

My heart breaks with total love for Freyja as she, as well as Luke has an amazing spirit & brings her Dad, her brothers & myself much joy.

Freyja 2

The Rest of Our Family

Sid 2

Sid

Kane 1

Kane

Luke & Freyja have 2 siblings, Kane who is 14 & Sid 5.

Both Kane & Sid had infantile epilepsy & have grown out of it & developed "normally".

Kane started having seizures at 8-9ths of age & was put on Tegretol (Carbamazepien) & by the age of 2 was taken of the drug & has not had any seizures since.
He is an above average student, very athletic & very healthy young adult.

Sid also began to have seizures at 8-9ths of age but we had trouble controlling his fits as he did not respond to a few of the drugs but finally he was put on Keppra & Epilim which controlled the seizures.
Sid is a very energetic & busy little man with no developmental issues.

There is absolutely no family history of epilepsy & as i have had 4 children with epilepsy (2 with MPEI) our whole families DNA is being studied in various research organisations here in Australia & in the US.

Luke, Freyja, Kane and Sid's mum Lee can be contacted on : mythreesons320@hotmail.com

Sid 1
Kane 2