**UPDATE** The overwhelming support has got us close to our goal of $40,000 & we can’t thank you all enough. This $40,000 is for the trip to US and the Clinic only. Any money raised after this will be put into a medical fund for Harper as this is a life long, and life changing illness. She will require procedures, appointments, medical equipment, special education and care moving forward for her whole life. The Bosleys thank you again for your support & kindness. **
This is my gorgeous god daughter Harper Mae Bosley. Harper is 4 years old and loves riding her bike & scooter, swimming and craft. Her mum is my best friend Carmen , her dad is Chris and she has 2 little brothers, Cooper and Spencer.
Harper was a very healthy and happy baby. She was full of smile, giggles and completely stole everyone's heart.
There had been some issues in her early years with Harper but nothing too concerning. She was born polydactyl. This meant she was born with extra fingers and toes. Harper had always been late to reach her milestones, she didn’t walk until 22 months and she didn’t speak many words until about the age of two. This wasn’t a call for concern, many children are delayed in their development.
At the age of 3 , Chris and Carmen began to search for some answers due to Harper having increased and unexplained weight gain. After advice from their paediatrician they went on the waiting list for genetic testing for over a year and the results came through in early July.
We received the news recently that Harper was born with a rare genetic disease called Bardet–Biedl Syndrome (BBS). We are all completely shattered, life for Harper would never be the same.
BBS is extremely rare, with only 150 people in Australia with the disease. The chances of having this is one in 160,000. Because of its rarity, a majority of the population are not aware of it (and unfortunately neither are most of the doctors).
BBS comes with multiple symptoms-
•90% chance of becoming legally blind by the age 12-15
•Renal problems, with many cases going into renal failure (kidneys)
•Cardiology (Heart problems)
•Issues with reproductive organs
•Substantial dental problems
and many others
Whilst Chris and Carmen were completely overwhelmed with this news, they have not stopped searching for information, reading medical journals and trying to understand what BBS is. Being so rare there is very little information available. It was during this time they found the Marshfield Clinic in Wisconsin, USA.
This clinic is in a small country town called Marshfield and it specialises in the Bardet–Biedl Syndrome. Dr Haws, who is the founder and leading physician of the clinic has created this place for the BBS community world wide.
This clinic has EVERY SINGLE doctor needed to have Harper evaluated and cared for to find a baseline to where she sits on the spectrum for all of the above issues. Effectively to put in preventative measures and treatments that may limit her exposure to many of the risks associated with BBS.
They hold workshops four times a year and it’s during these periods that the clinic can guarantee that all doctors who specialise in their field as well as specialising in BBS will be present in the clinic. The workshops go for four days, and over this time Harper would be able to see every specialist that she needs. After doing their research and getting the green light from Harpers geneticist, The Bosley's are traveling to the US on October 11th to attend the clinic.
They are not covered in any way by medical insurances as the treatment is in the US (despite there being no local options) and they will be paying for this on their own. The cost of this 4 day clinic including travel will be in excess of $40,000.
Any contributions will help with the cost associated with the clinic in US, travel, extra medical expenses, and caring for Harper.
Thank you for taking the time to read Harper’s story. Whether or not your able to help financially or otherwise, we appreciate if you could share this campaign far and wide and keep Harper and the family in your thoughts and prayers.
Harper- we love you! Stay strong little one. #hopeforharper