Evie was born on the 22 April 2010 ..Having a newborn is suppose to be a celebration ,for me that was not the case at all , Evie was not feeding properly I also noticed "tremor" like episodes her little body would be so stiff but very jerky at the same time,i knew this was not normal at all.. so in and out of hospitals,clinics and whoever else would listen,they found nothing at all ,well then came projectile vomiting over and over, Evie's weight dropping by the day,Evie wouldn't fix and follow with her eye's or respond to sounds i knew there was something wrong but what?? the days turned to months and still nothing until Evie had a standard check up with GP by now Evie was four months old the doctor noticed Evie's soft spots on her head had closed and said it was a possible sign of brain damage my heart sank ..we were then told to take Evie to our local hospital where she underwent blood work ,spinal fluid test {lumber puncture} to watch your baby go through this and cry until they just can't cry no more,That really pulls the heart strings! anger and frustration soon set in ,my time of joy was a complete nightmare! walking on eggshells as Evie would then just stop breathing ... the hospital stated that the amount of vomiting and "gaspy" breathing it was likely that I was over feeding her ..I came a way with a tremendous amount of guilt ! did I make my child sick?
2011 DEC.... Evie had an MRI head scan so all we could do was wait in between the infections ,admissions to hospital and the tears! Then FEB 2012 the results where in, Evie had an abnormal scan but still no information to what or why this was... MARCH:2012 Evie had a muscle biopsy and then five months later in JULY two days before my birthday it was said that Evie had this Mitochondrial disease i was so relieved to have an answer .. none of the wiser what it actually was, i was told it was to do with energy and "not to worry" so i didn't . they also mentioned that there are different syndromes associated with this disease and they do not know what syndrome Evie has that was JULY 2012 ... now to date WE STILL DON'T KNOW ... We are waiting for "if and when" last MARCH evie was starving to death as she could not swallow seen a lot of dieticians who said to try and make more of an effort to feed my daughter as maybe i was too anxious ! they had no idea to be honest as i have weaned four happy healthy thriving children before Evie ... so now i had a two year old little girl who could not swallow drop to 14 pound in weight ... i went to my doctor in tears who then seen just how sick Evie was her eyes sunk her face so thin, it was awful... They admitted Evie right away and got her on the NG tube ..what a difference it has made ..Evie is now three and a healthy 24 pound in weight ..well healthy for Evie ,she can not walk but bum shuffles ..it has to be said again she hit rock bottom before doctors intervention! I know they can not work miracles but even so a mother knows her child ..its the most powerful tool in the universe ..It also turned out Evie has allergy to baby milk so it was not due to over feeding ... we are now waiting for surgery so Evie can have the peg in her tummy it was booked for MAY but guess what ,still nothing,I will update if and when that happens .... we have a long rough road ahead and this I understand but we still do not have a lot of information regarding Evie and her health we know what we the family have researched ourselves, I still 100% don't know what it all involves ..Evie has now been referred to TY HAFEN children's hospice ,and again we were told not to worry ..so we are trying to raise the funding to maybe get private treatment and help ,again I know there is NO CURE but there could be treatments and useful things we could be doing to stop this awful disease progressing ! thank you for reading this ... more to follow with love Evie and family! x xx
2011 DEC.... Evie had an MRI head scan so all we could do was wait in between the infections ,admissions to hospital and the tears! Then FEB 2012 the results where in, Evie had an abnormal scan but still no information to what or why this was... MARCH:2012 Evie had a muscle biopsy and then five months later in JULY two days before my birthday it was said that Evie had this Mitochondrial disease i was so relieved to have an answer .. none of the wiser what it actually was, i was told it was to do with energy and "not to worry" so i didn't . they also mentioned that there are different syndromes associated with this disease and they do not know what syndrome Evie has that was JULY 2012 ... now to date WE STILL DON'T KNOW ... We are waiting for "if and when" last MARCH evie was starving to death as she could not swallow seen a lot of dieticians who said to try and make more of an effort to feed my daughter as maybe i was too anxious ! they had no idea to be honest as i have weaned four happy healthy thriving children before Evie ... so now i had a two year old little girl who could not swallow drop to 14 pound in weight ... i went to my doctor in tears who then seen just how sick Evie was her eyes sunk her face so thin, it was awful... They admitted Evie right away and got her on the NG tube ..what a difference it has made ..Evie is now three and a healthy 24 pound in weight ..well healthy for Evie ,she can not walk but bum shuffles ..it has to be said again she hit rock bottom before doctors intervention! I know they can not work miracles but even so a mother knows her child ..its the most powerful tool in the universe ..It also turned out Evie has allergy to baby milk so it was not due to over feeding ... we are now waiting for surgery so Evie can have the peg in her tummy it was booked for MAY but guess what ,still nothing,I will update if and when that happens .... we have a long rough road ahead and this I understand but we still do not have a lot of information regarding Evie and her health we know what we the family have researched ourselves, I still 100% don't know what it all involves ..Evie has now been referred to TY HAFEN children's hospice ,and again we were told not to worry ..so we are trying to raise the funding to maybe get private treatment and help ,again I know there is NO CURE but there could be treatments and useful things we could be doing to stop this awful disease progressing ! thank you for reading this ... more to follow with love Evie and family! x xx