#Bottleblog – #HelpClaudia – Let’s give a name to Claudia’s disease ( #LeIene @redazioneiene ) SHARE IT ON THE NET SHARE THIS VIDEO EVERYWHERE YOU CAN

CLAUDIA’S MEDICAL RECORDS

#helpclaudia

Firts symptoms at the age of 5: vomit, tiredness, loss of balance, sudden falls.

After two years the vomit disappears but falls became more and more frequent. Tiredness becomes persistent, muscular weakness becomes progressive and she started suffering a persistent belly pain.

Her growth is very slow but until the age of 13 she can walk on her legs.

In June of 2013 she has a breath arrest. She has surgery and the surgeon extracted from her lungs a block of mucus as big as an apple. She never suffered of breath problems before, just occasional common colds.

After this episode and the consequent intensive care hospitalization, she becomes unable to get up and walk, although she still can move her hands and legs.

Her diet consist in meat, pasta and vegetables but if she eats milk or other dairy products her conditions get worse, despite lab tests say she’s not allergic.

Clinical examinations escluded that Claudia is affected by one of the known degenerative diseases, for example ALS or Duchenne syndrome.

Today Claudia is 15 years old and her disease is still unnamed.

 

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#Bottleblog – #Cancer – Kirsty

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In February 2011, Kirsty was diagnosed with breast cancer. Having seen her grandmother die from the same disease 20 years before, she feared the worst. However, after intensive treatment including a mastectomy, chemotherapy and radiotherapy, she is now looking forward to the future. Kirsty has been chosen as one our 26 ‘Go the Distance Ambassadors’ who have been recruited to encourage people to undertake a running challenge in 2015. Kirsty says: ‘”I continued to run and cycle throughout my cancer treatment. It was like running through treacle but I did it, and it really helped me mentally. Cancer Research UK is very close to my heart and I’m delighted to have been chosen as an ambassador for the charity’s very special year of running.” If you feel inspired by Kirsty’s story and would like to take on a running challenge to help us beat cancer sooner,

visit: http://bit.ly/MTDkP5

#Bottleblog – #Tumor – by Shannon Carey 77 ‏@samberlynn

I wish this was my story and not my 13 year old daughters. I would have given anything for it to be me and not her. Then sentence that changed our lives, Her scans tested positive for a brain tumor, we need to operate as soon as possible.

On 4/10 Samantha underwent a craniotomy to remove the brain tumor which was a success. She had regained 75% of her left side and was sent home from PICU to recover on 4/16. Samantha operation site began to swell and accumulate fluid buildup. Dr’s drained her 3 times to no avail. Samantha was re admitted to PICU at Saint Peters for swelling on the brain with an infection on 4/23. Doctor’s decided to remove her skull flap and put in a stent and treat with IV antibiotics on 4/24. The stent was removed the following day. Less then 24 hours later swelling returned and she remained in the hospital for the infection and fluid monitoring. As a last resort Dr’s decided to put in a VP shunt under the missing bone flap to control and regulate the fluids in the brain on 4/30. Samantha had to continue IV antibiotics so the doctors inserted a PICC line on 5/3 so she can continue to receive treatment while recovering at home.
After 4 months of physical and occupational therapy Samantha has made a 4+ recovery.
On September 5th her brain swelling was minimal enough for her 4th cranial operation to replace her missing bone flap with a metal and bone cemented skull plate, at Robert Wood Johnson Hospital.
Samantha is recovering beyond the doctors expositions and will be returned back to school in Nov 3013.
She has a great team of doctors that will be treating and following her for the rest of her life.
The Make A Wish foundation has granted Samantha her wish, to go zip lining this spring 2014 in Hawaii. We enjoyed ever moment of it.