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Have I Ever Told You About Inga?

Inga is a very special lady from Orkney who came into our lives as our children's nanny fifteen years ago. At the time our eldest son Connor was just a year old. Quickly on his heels arrived second son Muir and then third son Rory, making a total of three, all under five years of age.

Little did any of us know that Inga was to become much more than a nanny to second son Muir who went on to develop a devastating form of epilepsy called Dravet Syndrome, with life threatening seizures beginning at the age of just 4 months. Muir's epilepsy is one of the most devastating forms of childhood epilepsy and further to a decade of uncontrollable seizures he is quite profoundly damaged with severe special needs.

Connor is now 17, Muir is 14 and Rory is 12. It has been a difficult 14 years for us all and we could not have coped with any of it without the commitment, dedication, love and care that Inga has given and continues to give to all three of our boys, but especially Muir whose needs have been her highest priority. Her commitment has been unending and unconditional throughout. She has been the glue that has held this family together. Her support has been life saving.

There is no doubt that Inga loves all of our boys equally, as if they are her own but her love for Muir is very special, they have a unique bond. They are soul mates. They share the same sense of humour and zest for life. Muir still has occasional life threatening seizures, he has limited speech and language, severe developmental delay, learning difficulties and behavioural problems. Inga is Muir's carer but she is also his voice. The care that Inga has extended to Muir since the day he was born has earned her the respect of all family members, his teachers, the medical profession and beyond. All have come to know her and trust her as if she is his second mother.

Additionally, her contribution to the care of Connor and Rory is also significant. Connor has grown in to a fine young man with Rory not far behind him. They love her dearly and although they often jest about still having a nanny, they could not imagine life without Inga. Fundamentally, Inga has taught Connor and Rory that "it is okay to care" - a unique quality in today's young people.

Whilst Inga has managed the day to day care of our three boys for over 15 years now (although more so Muir in recent years,) my husband, Jonny, travelled with his work for many of those years and I worked full time in the early days and then part-time and then I stopped working whilst Muir's problems were at their worst.

In 2003 I established the Muir Maxwell Trust, a charity set up in Muir's name to raise funds to provide practical support for children and their families struggling to cope with difficult epilepsy.  The rest is pretty much history except to say that I am very conscious that none of this would have been possible without Inga. She has even been known to spend her free time in the offices of the Muir Maxwell Trust stuffing envelopes!

My dream would be to provide an Inga for every family struggling to cope with a child who has difficult epilepsy. She has been the Maxwell family's saviour - literally! 

 

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