Weʼve raised £0 to help fund for adaptations needed for our son to return home
- Warrington, UK
- Closed on Wednesday, 22nd August 2018
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Archie was born on 12th August 2016 with severe life limiting and life-threatening disabilities. Archie has a condition called Hyperekplexia which is also known as startle syndrome. It causes Archie to go into hyper-tonic states which then leads to him to stop breathing. Archie also suffers with GORD, Hyper-thyroid, Idiopathic Hyperglycaemia, Repaired Pulmonary Heart Stenosis, Silent Aspiration meaning he is fed through a feed pump into his bowel, He has two small bleeds on his brain and also a cyst on the left ventricles. We have also always known that Archie bruises easily and continuously no matter who's care he is under.
For the past year we have been fighting legal battles with social services as they have tried to remove Archie from his parents because they believed these bruises were caused by abuse. In April/May 2018 a Dr at Alder Hey Children’s advised the courts that Archie more than likely has a bruising disorder which could be related to his collegeon. Obviously due to this the Judge found the parents had not caused any harm to their child and in fact his bruising was from a rare bruising disorder. Normal care cases at court take 26 weeks however this family have had him removed from their care and had to go through the legal process for 52 weeks.
During the legal process the family were advised that the local authority would need to put a plan in place for all eventualities. This means a plan for going home or going to a care home. The local authority has only just started this process since the Judge made his Judgement that Archie should return home to his parents. This involves asking an Occupational Therapist to access the home for potential adaptations needed due to Archie’s disabilities. After this visit it was established that a grant would be provided for the sum of £30,000 to make these adaptations. However, if any work goes over this amount we would need to find money to pay for this ourselves.
The adaptations needed include and through floor lift (£8-9,000), Tracking, Hoists, Wet rooms, removing walls and ceilings to allow more space down corridors which then includes putting in RSJ's along with also new floors due to his equipment. The parents will have to sacrifice their bedroom to allow for all this equipment to be placed into the house and will have no room to live. They have a small 2-bedroom terraced property and could really do with moving house into a bungalow with 3 bedrooms to allow for more space to live.
Due to the past year they have been through a lot of stress and upset however the father has suffered with PTSD and has gone through severe depression and anxiety due to him not having his son with him through no fault of his own. Thus, meaning unfortunately he no longer has a job and neither does the mother due to being Archie’s full-time career. It appears the father may only be able to go back to work part time due to their son’s disabilities and the mother may never able to return to work. This means they have no funds available to either put towards the adaptations and put up with not having any room or any money to move and invest in a bigger property.
This is why they are asking for £30,000 however more than this would also be extremely helpful. This would allow and help them to move to a bigger property where the £30,000 grant would still be available for adaptations. So please please please find it somewhere in your heart to help this family who are going through a lot of stress and hard work but have been put into a position through no fault of their own and are being told its tough by the local authority. Archie needs constant stimulation and development along with regular physio due to him being developmentally the age of a 3-month-old. The adaptations would make it physically impossible to do this however the parents are still trying so so hard to work out ways of doing it. The parents continue to try their upmost for their son’s development and would kindly ask if you can provide any help in donating money for Archie to have better living conditions and not be placed in a cramped house where they can’t develop their son and giving what every child should have - FREEDOM, FUN AND COMFORT.
Thank you very much, even just a small amount will help.
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