Harry's Journey


Molly's Story

Molly was born on the 13/08/04 after a fairly good pregnancy and normal delivery.  When Molly was a few weeks old we noticed her hands, head and feet all twitched rhythmically, we were told this was normal baby behaviour as long as she did it whilst asleep.


Then on the 26/10/04 at 10 weeks old molly had her first generalised seizure and was rushed to our local hospital where, after another seizure they started her on her first medication phenobarbitone, and after an MRI scan which was normal discharged home.  A few days later we returned back with to hospital with more seizures then discharged home a few days later.


Our Time In Hospital

This is how are lives became up until Christmas 2004, by now on our second medication Epilim. Molly stayed in our local hospital 4 wks and was started on a third medication Vigabitrin, which worked for 4 days.  By now all metabolic and genetic test were showing normal. Molly was then took to Alder Hey were she spent another 3 weeks and started on yet another medication Carbamazpine.  On Vigabatrin and Carbamazpine molly had 4 fantastic months with about 4 generalised seizures in this time we thought we had cracked it, molly made some improvement with her development and hospital a thing of the past WRONG.


After a General Anaesthetic on the 5/07/05 for grommets molly’s seizures came back every 2-3 weeks molly would have a build up of 10-15 short lasting seizures a day for 2 days followed by a 30 min generalised seizure, rescue meds like diazepam and Buckle Malayalam did not work so hospital admission was needed on most occasions.  This continued until September 05 in this time molly had a few changes to medication Vigabatrin was stopped. Clopazam, Kepra, Phenatoin and Phenababatone again were tried with brief or no response.


How Things Are Now

On the 21/09/05 molly was once again admitted with a 30 min seizure we thought molly would be home in a few days as usual again but we were WRONG.  Molly’s condition deteriorated and by the 11/10/05 molly was having up to 100 generalised seizures a day lasting between 30 sec and 2 mins molly was started on a Clanazapan infusion and rushed to high dependency Alder Hey the infusion settled molly’s seizures but when it was stopped they came back with a vengeance.  Molly was then started on Zonisamide, which she had an allergic reaction to.


Molly spent along time in Alder Hey with 1 admission to intensive care due to a bad airway, which resulted in tonsils and adenoids being removed, and numerous admissions to HDU due to increased seizures.  On molly’s last stay in HDU molly’s condition was touch and go as well as uncontrollable seizures molly had a 1.2cm clot in her heart this has now gone thank god.  Molly stayed for 4mths in Alder Hey and was diagnosed with migrating partial epilepsy of infancy.  Molly left Alder Hey on the 28/02/06 back to our local hospital on the Ketogenic diet and Topiramate.


She finally came home on the 18/04/06 and apart from the odd hiccup is relatively stable for the condition.  Up until molly went into Alder Hey in October she ate well, she is now unable to eat and everything she has is fed through her Gastrostomy.  Molly has also suffered severe regression in her development she can’t hold her head or use her arms and legs like you or I.

Molly's Mummy Can Be Contacted Via - topaz1971@gmail.com

Molly passed away peacefully at Claire House Children's Hospice on the 20th January 2008 in her Mummy and Daddy's arms. This followed a long illness during which she spent time in ITU and HDU at Alder Hey Childrens Hospital. Our thoughts and prayers are with her parents, Debbie and Brian, and her siblings Alicia and Rhys at this difficult time.