Cystic Fibosis Fundraisers

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About Me

I am Lorraine, mum to two boys who both have the genetically inherited life-limiting condition Cystic Fibrosis.  Daniel is 21 years old and Joseph is 13 years old.

My 50th birthday is approaching and as it is a "milestone" I am a bit apprehensive about meeting head on, I thought I'd give myself something else to focus on between now and then to keep me busy in the lead up to my 50th Birthday Charity Ball for the Cystic Fibrosis Trust which will take place at Belton House, Grantham on 20th May 2016.

I intend on completing 50 Fundraisers for the Cystic Fibrosis Trust in the 19 months until my 50th Birthday and hope to raise £50,000 by the end of my Birthday Charity Ball.

I am asking family and friends to not buy me presents for my 50th Birthday, but to instead make a donation, no matter how small, to the Cystic Fibrosis Trust.  There is nothing in my life I need or want more than my sons to have a secure future - I want them to see 50 years old, and beyond.

I have set up a Justgiving page to help me with my biggest challenge:  TO RAISE £50,000 for the Cystic Fibrosis Trust.  Click HERE to support me or the LINK on the Home Page.

Awards

About My Son's

Daniel is 21 years old and started a 3 year Degree in Business Studies at Lincoln University in September 2014.  He remains relatively well with very little intervention other than nebulised DNase, Promixin and Vitamins.

Joseph is 13 years old and seems to get everything thrown at him courtesy of Cystic Fibrosis Complications.  He has CF Related Diabetes, CF Related Liver Disease, Severe Bronchiectasis, Nasal Polyps, Reflux and his weight gain is poor so he had a  Gastrostomy in January 2015 - he is fed overnight with 1000 ml Peptomen Junior.   He has IV antibiotics every 2 - 3 months for 2/3 weeks.
He is due to have a Fundoplication procedure done soon and has been in Hospital 7 times during my Challenge.

The Boys Medication/Treatments

Daniel
 
Diagnosed with Cystic Fibrosis in 2000 aged 4.

3 x Multiviamins a day
1 x Vitamin E a day
1 x Omeprazole a day
1 x Vitamin K a day
Creon 25000  25 - 30 tablets a day with food
Nebulised Promixin twice a day
Nebulised Tobramycin every other month twice a day
Scandishakes twice a day
Portacath in chest flushed every 6 weeks.
IV antibiotics on average twice a year at moment

Lung Function averages 70 - 78%
Joseph

Diagnosed with Cystic Fibrosis aged 4 days old.

8 Units Levimer (Insulin) a day
Blood Sugar testing 2 - 3 times a day
1 Vitamin E a day
4 Vitamin AD a day
1 Lansaprazole twice a day
Azithromycin Antibiotic Monday, Wednesday & Friday
Acapella or PEP Physio Twice a day
Nebulised DNase once a day
Inhaled Salbutamol before Physio twice a day
Inhaled Seritide after Physio twice a day
Nebulised Promixin twice a day
Avamys Nasal Spray once a day
500mg Ursodeoxycholic acid once a day
Scandishakes 1 - 2 times a day
Creon 25000  20 - 25 tablets a day with meals
IV Antibiotics every 2 - 3 months for 2/3 weeks
Peptomen Junior 1000 ml Liquid Feed overnight
Portacath flushed every 6 weeks
Hearing Test once a year
Diabetes Clinic every 3 months
Diabetes Eye Screening Once a year.

Joseph had a Gastrostomy on 14th January 2015 to try and help him gain weight.

Joseph's Lung Function has dropped to an average of 43 - 51% for over 6 months.