“I’m dreading the day Leah forgets who I am. I hope that she stays just as she is now and doesn’t deteriorate any more but I know that she may start changing by next month again. I just take it day by day, one day she has a good day, one day she has a bad day.”
Leah’s mum, Lindsey Garfitt
Leah Garfitt is just nine-years-old and is senile. Until the age of five, Leah lived a normal life, but, in the last four years, dementia, caused by a genetic disease, has set in and she can no longer remember how to walk, write, eat or talk properly.
There are only 500 children in the world suffering from Niemann-Pick disease, which will eventually claim Leah’s life. Leah’s Dream is a documentary telling the story of a mother’s love as she comes to terms with her daughter’s terminal illness and sets out to make every day a happy one.
The film follows Leah over the last two and a half years as, despite her illness, she stays in a mainstream school with her friends for as long as she can, doing her best to learn like her peers as her condition deteriorates. Leah is seen visiting the doctor and her determination is captured as she attempts to carry out every physical test he challenges her with. She is also seen playing and dancing with her mum and dad as they try to help her to live as much of a normal life as possible.
Leah’s mum, Lindsey, tells the programme: “I’m dreading the day Leah forgets who I am. I hope that she stays just as she is now and doesn’t deteriorate any more but I know that she may start changing by next month again. I just take it day by day, one day she has a good day, one day she has a bad day.”
The film begins with scenes of Leah’s seventh birthday as she celebrates and sings to High School Musical.
Lindsey tells the programme that she got pregnant with Leah when
she was just 16 and that her daughter was only a few months old when she noticed that she seemed tired and fragile. Tests revealed that Leah was suffering from Niemann-Pick, an extremely rare genetic disease. Both Lindsey and Leah’s father, Michael, carry the gene but were unaware of it.
They describe what it’s been like for Leah as the condition started to take over her body. By the time she was eight she was struggling to eat and walk. In spite of this, Leah remained in a mainstream school until she was nine. Her teacher shows the programme her work and Leah is seen winning an award and taking part in the end of term celebrations as she prepares to move to a special school.
Michael tells the programme that Leah doesn’t realise she is ill and often dreams of what she will do when she grows up. He says: “She has said sometimes she wants to be a hairdresser, sometimes she wants to be a vet. She likes Hannah Montana, so she wants to be a singer. She’s always coming out with stuff like, ‘When I’m older I want to be this and this.’”
The family tell the programme that their dream is that a cure will be found before Leah forgets who they are, but they know that this is unlikely.
Lindsey says: “Not too sure what the future holds for Leah. To be honest and true you’re living in limbo. You don’t know where you’re at, and you don’t know what is going to happen. And you can’t predict what is going to happen. So you have just got to take it day by day. And have a happy day on that day, every day.”
Lindsey also shares with the programme her own courageous story. In 2005 she was diagnosed with a brain tumour and almost died on the operating table. She explains how thoughts of Leah pulled her through.
As Leah starts her new school there is apprehension among her family, but she comes back after having a great day and is seen acting out an X-Factor game with her mum.
By Christmas 2009, Leah is using a wheelchair to get around and Lindsey shares with the programme a box of memories she has put together for Leah to help her remember things.
Lindsey says: “She gets very frustrated that she can’t remember what she has been doing that day or yesterday or last week. Leah has gone back to when she was like two or three. ‘Do you remember when I did that mum?’ I’m like, ‘Yeah, sweetheart I do.’”
Michael says: “Knowing that she’s got it makes you try harder to please her. Just to show, just to make her enjoy it and see her smile. She taught me to care for people more I think. Just to enjoy what you’ve got.”
Tuesday, 1 March 2011, 9:00PM – 10:00PM ITV1