Paige have access to the garden

Hi, my name is Lisa and I am lucky enough to be mummy to Paige.

Paige was born with a life limiting brain condition called Lissencephaly meaning her brain is completely smooth, resulting in a secondary condition of epilepsy and global developmental delay.

Due to her condition, Paige relies on specialist equipment to sit, stand and general day to day life.

we are looking for support to raise funds for an outdoor lift that will enable Paige to access the main part of the family garden.

These usually cost £9000 second hand.

Paiges story….

Paige was born 25th April 2017 after a very typical pregnancy and labour. For the first 5 months of her life, Paige did not meet milestones, slept all day and night and had no physical control. At health visitor appointments, we would discuss her lack of head control and inability to swallow milk without coughing and being sick.

We were told she was dairy intolerant but the coughing and sickness continued even with the special formula.

At 5 months old we tried to start weaning, however, she was slumped in a high chair, propped up with cushions and she experienced what we now know was her first seizure.

Paige was rushed to A&E and admitted to Bluefin Ward at Worthing Hospital. Luckily we were able to video the first seizure, helping explain the symptoms to the doctors. We were told Paige did not have a ‘safe swallow’ and she was fitted with a Nasogastric tube.

In the following days, Paige went through blood tests, MRI scans and invasive testing which resulted in the diagnosis of her condition.

Lissencephaly is a rare brain condition affecting 10-40 per million babies. Development for these children is delayed and in majority of cases, the children will not live past 10 years old.

The conversations that followed with the consultants left us in disbelief, shock and unable to process the information given to us. We were told Paiges condition would require her to have 24 hour care, mobility aids and she would never be able to do anything independently. Our lives were ripped from us.

At the time, Paiges sister Isla, was only 4 years old and had just started school. My husband was working full time and I was due to return to work the following month. At this point I stayed with Paige in hospital for two weeks where she was given epilepsy medication, fed through a tube and constantly monitored day and night.

The day we came out of hospital, we would put into practice what would now become normal life. Medication, feeding routines, visits from the Community Nursing Team, Paediatric Consultants, Specialist Support sessions and Speech and Language therapists.

Instantly we saw progress although we had been warned this would be slow and our expectations were set very low.

Paige still experiences multiple epileptic seizures daily and in some instances requires rescue meds and hospital admission. This is a daily battle and this is now part of her daily life.

Now 5 years old, in Year 1 at Heronsdale Primary School in Shoreham By Sea, Paige has exceeded the initial expectations set up by the Consultants.

With the support of her therapist and determination of our family, Paige is now able to eat solid meals, sit herself up for short periods of time, play, understand communication and recently has taken her first few steps with her walking aid. All of which we were told may never have been possible.

We have just been granted some support from the council to make necessary adaptions to the house to ensure her safety as well as ours and to assist with further development. The work put forward by the Occupational Therapists covers correct access for Paige in the house, however, we have a two levelled garden we would like Paige to have access too. This would require an outdoor weatherproof lift ranging from £9000 second hand.

Paiges condition is life limiting and as a family, creating memories and giving experiences to her are so important.

Our precious daughter is defying the doctors expectations and we want to continue pushing her to achieve as much as she possibly can.

Any support we can gain will change our daughters life.

Lots of love

Lisa, Rich, isla and most importantly Paige. Xxxx