Help Skye receive a life-benefitting nebuliser!!!

Hello my name is Sophie,

I have decided to start this vital fundraiser for my daughter Skye who is 14 years old. Skye has faced extreme daily challenges since birth and continues to now, she was firstly diagnosed with the daunting condition SMA type 2 at the age 3 months since I fought for her to undergo genetic testing since her older sister Amelia had previously received this diagnosis. SMA affects every single aspect of Skye and her sisters life which includes extreme muscle weakness, respiratory issues and other medical condition resulting in Skye being a full time wheelchair user, and requires a 24/7 caregiver which helps her with personal care. As Skye’s age has progressed her condition has also continued to rapidly decline resulting in Skye having to face many more medical challenges and being diagnosed with many life threatening/ limited conditions including scoliosis, respiratory failure, esophagitis and a chronic collapsed lung. These terrible conditions have had a huge negative impact on Skye leaving her an impatient in hospital for a total of 28 months in the last 3 years and only spending a few weeks at a time at home… this has had a major effect on Skye’s health and emotive state too, after not being able to attend school for the vast majority of her secondary school journey so far leaving her feeling isolated and not being able to spend precious time with her siblings, family and friends. Skye relies on her BIPAP ventilator over night and when she generally isn’t well, along with these medical interventions used multiple times a day - suction, cough assist and a nebuliser. Skye now needs intensive chest physio 3 times a day or more which includes Skye having to use a standard nebuliser when at home which unfortunately takes 30 minutes for it to treat her and only provides Skye with a small amount of the medication within the nebuliser, this then loosens her secretion’s ready to undergo her intense cough assist which assists her to be able to have a stronger cough to help clear the mucus on her lungs whilst suctioning at the same time, however as Skye has SMA this is extremely difficult and tiring for her but is absolutely necessary… however when Skye has been an impatient and currently continues to be Skye uses a new handheld nebuliser allowing Skye to move around if she wishes whilst receiving this vital medication which is proven to be affective and gives her at-least 4-6 times the amount of a standard ‘jet’ nebuliser amount of effective medication directly into her lungs, which supports Skye in staying out of hospital, it has also been proven to help Skye’s cough assist routine to be more effective due it only taking a short period of time and it is extremely light for her to be able to hold it which helps Skye to be less tired and therefore be able to tolerate more life benefitting treatment which can aid to speed up her recovery allowing her to spend precious time at home with our family. However this life - benefitting nebuliser is not funded through the NHS leaving Skye without this vital piece of equipment… recently I have been told the devastating news that the base of Skye’s lung has now completely collapsed leaving Skye weaker each time. She is now battling this horrible condition with only one lung as well as having respiratory failure… Therefore I have made the decision to ask the public to help with funds which I have never wanted or intended to do but Skye needs this vital medical device - please note; any extra funds will be spent on new mouth pieces for this vital nebuliser as these are essential and come with a substantial cost, funds also will support travel costs, parking and essentials for Skye while receiving treatment in hospital.

Thankyou so much for reading please share and consider donating no matter how big or small all donations will be greatly appreciated.