There is no footprint too small to leave an imprint on this world.
Author unknown
I would love to share with you a little about this wonderful little family.
I first met Lorraine through an online pregnancy group as we were both due at the same time with our 3rd child. We became friends and I was introduced to her eldest son Bryce.
Bryce was diagnosed in June 2005 at the age of 4 with late-infantile Batten Disease (NCL). Batten Disease is a very rare neurodegenerative condition (that is it affects the brain and central nervous systems). It is a recessive condition meaning that both parents must carry a copy of the same gene. Affected children inherit this bad gene from both parents.
At birth and for many years following, Batten Disease children appear normal, gaining skills and reaching milestones as quickly as any other child of the same age. Symptoms of the disease occur when a build-up of toxic substances accumulate in the cells of the brain. Such symptoms can include (but are not limited to) loss of vision which eventuates to complete blindness, seizures, clumsiness and personality changes. Children lose general gross and fine motor skills over the course of months and years. Eventually Batten Disease causes continuing physical and mental retardation to the point where the child becomes dependent in every aspect of their lives.
At the present time there is NO TREATMENT or CURE for Batten Disease.
Tragically Bryce lost his battle with Batten Disease on May 29th 2011 warm in his bed, aged just 10 years and 2 weeks old.
After a child's death, parents embark on a long, sad journey that can be very frightening and extremely lonely- a journey that never really ends. The grief of bereaved parents is the most intense grief known. When a child dies, parents feel that a part of them has died, that a vital and core part of them has been ripped away.
I am personally well aware of this. Watching my parents after losing my eldest sister when she was just 15 years of age.
Lorraine is still on this journey, and during it unfortunately her marriage broke down and another blow was dealt to her.
This amazing woman however still gets up everyday and is thankful for her 2 beautiful children still here with her. She can still put a smile on her face and face another day. Her love for her kids is so strong you can see it in everything she does.
Lorraine, I can't express how amazing you are. Even if you don't feel it and some days you want to give up, you don't! You keep going and that takes amazing strength.
I am so thankful to know you and to be able to capture some beautiful family memories for you and your beautiful children.
If you would like to know more about Batten Disease or donate some money to help find a cure, or even treatment, then please visit http://www.battens.org.au/.
Koroli xxx
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