harpers bucket list
Donation protected
Harper Dorothy Foggin born 15.02.2018
After being born and placed into special care with breathing issues and breath holding episodes Harper was transferred to the Royal Victoria Infirmary Newcastle. Whilst there Harper received her first diagnosis, Laryngomalacia; a floppy airway. Harper was discharged as it would supposedly get better with age.
After a week short weeks at home, Harper stopped breathing and was chocking after receiving emergency first aid from her mother Carly she was brought into the RVI pediatric intensity care unit (PICU). In her first couple of weeks in PICU it was apparent that her breathing difficulties were worse than before and there was underlying neurological issue.
Experts from across the fields examined Harper; tests began and concerns rose. Harper's health and well being was at a critical level and on Friday 13th of May 2018 the decision to insert a tracheotomy was made.
After more investigations Harper's initial diagnosis was Congenital Mysthenia and treatment began; whilst some improvement was made on a trial drug Pyridostigmine and salbutimol the improvement was limited.
After two and half months in PICU Harper was discharged, more tests were ran and on Thursday 5th July a final diagnosis was reached and confirmed by several hospitals and experts.
Harper was officially diagnosed with Type 2 Gauchers Disease.
Type 2 Gaucher disease is a very rare, rapildly progessive form of Gaucher disease which affects the brain (central nervous system) as well as the spleen, liver, lungs and bones. Formerly called infantile Gaucher disease, it is characterised by severe neurological (brain) involvement in the first year of life. It is also called acute neuronopathic Gaucher disease. Fewer than 1 in 100,000 newborn babies have Type 2 disease and this form of the disease shows no ethnic predilection.
Babies usually appear normal at birth but develop symptoms by the age of 3 to 6 months. Type 2 is almost always apparent by 6 months of age. The vast majority of children die by the age of two years. However, a small number have survived a little longer.
There is no cure. There is no known treatment.
Which is why we need your help, whilst we hold out hope for a treatment, we have asked family and friends to create a bucket list for Harper. We aim to complete as many of these activities with her as possible, we have limited resources to do so we would really appreciate your help so we can give Harper the best life she could have with whatever time we have with her.
Thankyou for your support!
with love Harper's parents, family and friends x
After being born and placed into special care with breathing issues and breath holding episodes Harper was transferred to the Royal Victoria Infirmary Newcastle. Whilst there Harper received her first diagnosis, Laryngomalacia; a floppy airway. Harper was discharged as it would supposedly get better with age.
After a week short weeks at home, Harper stopped breathing and was chocking after receiving emergency first aid from her mother Carly she was brought into the RVI pediatric intensity care unit (PICU). In her first couple of weeks in PICU it was apparent that her breathing difficulties were worse than before and there was underlying neurological issue.
Experts from across the fields examined Harper; tests began and concerns rose. Harper's health and well being was at a critical level and on Friday 13th of May 2018 the decision to insert a tracheotomy was made.
After more investigations Harper's initial diagnosis was Congenital Mysthenia and treatment began; whilst some improvement was made on a trial drug Pyridostigmine and salbutimol the improvement was limited.
After two and half months in PICU Harper was discharged, more tests were ran and on Thursday 5th July a final diagnosis was reached and confirmed by several hospitals and experts.
Harper was officially diagnosed with Type 2 Gauchers Disease.
Type 2 Gaucher disease is a very rare, rapildly progessive form of Gaucher disease which affects the brain (central nervous system) as well as the spleen, liver, lungs and bones. Formerly called infantile Gaucher disease, it is characterised by severe neurological (brain) involvement in the first year of life. It is also called acute neuronopathic Gaucher disease. Fewer than 1 in 100,000 newborn babies have Type 2 disease and this form of the disease shows no ethnic predilection.
Babies usually appear normal at birth but develop symptoms by the age of 3 to 6 months. Type 2 is almost always apparent by 6 months of age. The vast majority of children die by the age of two years. However, a small number have survived a little longer.
There is no cure. There is no known treatment.
Which is why we need your help, whilst we hold out hope for a treatment, we have asked family and friends to create a bucket list for Harper. We aim to complete as many of these activities with her as possible, we have limited resources to do so we would really appreciate your help so we can give Harper the best life she could have with whatever time we have with her.
Thankyou for your support!
with love Harper's parents, family and friends x
Fundraising team: harpers heroes (5)
Carly Martin Edminson
Organizer
Connor Foggin
Beneficiary
Barbara Day
Team member
Hollie Hunter
Team member
Lois Foggin
Team member
