My name is Glenda &amp; I decided to start this Go Fund Me page to try to help Katie &amp; David raise funds to support their beautiful daughter Penelope.  We have watched Katie's family struggle so much over the years with little or no help from anybody.  Penelope is being failed so badly &amp; I can't stand by and watch what it is doing to her &amp; her remarkable Mam &amp; Dad anymore.  If we can just raise some funds so that Penelope gets the equipment she needs to live her life comfortably that would be such a help for her and her family.   Katie &amp; David have given me their permission to do this.  They were a bit reluctant at first but realise that time is of the essence where Penelope's care and comfort is concerned and they just cannot do it all themselves. A little bit about Penelope from Katie Penelope has a life limiting illness (Pontocerebellar hypoplasia) Penelope’s exact variant has only been identified in one other patient. It is extremely rare and degenerative.  It is a deleterious disease and any skill she has, she will more than likely lose. Caring for Penelope is of the same level as caring for a newborn baby. She has optic nerve hypoplasia and extremely bad dystonia that is proving hard to treat along with many other complex issues such as secondary microcephaly. Penelope can not sleep at night and is on a cocktail of medication to sleep at night, She wakes most nights and does not go back to sleep despite medication. Penelope is tube fed, completely nil by mouth, cannot walk, talk or sit.  Penelope is on a large amount of medication each day including benzodiazepines and sodium valproate.  She suffers double incontinence and wears nappies. She is currently using a nebuliser to help with respiratory issues. She requires round the clock care.  Penelope is not in receipt of HSE nursing hours. Penelope’s only nursing care is via the jack and Jill nursing foundation. During COVID lockdowns all nursing was stopped due to fear of Covid infection. Penelope has only recently stopped cocooning and when fit, attends pre-school. Penelope currently weights 20.2kg. She has no safe bathing equipment.   Being told to wait when you don’t have time is infuriating. Every day without safe equipment is putting her at risk. If Penelope falls, she can’t put her arms out to save herself. She is extremely vulnerable and fragile. We are in the middle of buying a house and will need to adapted it for Penelope’s increasing needs, an adequate wet room, downstairs bedroom, changing area and wheelchair accessible ramps. We also need storage for the large quantities of medicines, feed, syringes, giving sets, bandages, nappies, medical equipment and pumps.       I'm asking you all to share this far and wide and try to contribute if circumstances allow.  Hopefully the powers that be see this fundraiser and the lengths that families have to go to to access basic equipment and therapies for their children. Thanks so much! Glenda 


* Update In a little over 6 hours we just about hit the €5,000 target!  This is incredible and testament to how much love we all have for little Penelope.  I've increased the target to €10,000.  Let's keep sharing the link &amp; getting her name out there #pushingforpenelope **Update We are smashing it lads thank you so much.    I've increased the target to €50,000.  Let's get this beautiful little girl everything she needs and more.

Niamh Bennett

Rory O Doherty

Niamh Wilson

Anonymous

Kim Bolger

HELEN MOLONEY

Prasannaa Vasunathan

Louise Hanaphy

Tracy Collins

Ailise Lynch

Emma Hogan

Vivienne McCarthy

Sarah  Kelly

Hazel O Donoghue

Sarah Conmy

Claire Vance

Penelope

Penelope

Todavía faltan €23,160. Ayúdanos a conseguir impulso.