Juvenile Batten Sisters
Donation protected
This is the hardest thing we've ever had to write and as painful as what you are about to hear has been for us, we firmly feel that God has an incredible plan with this and we are completely trusting Him through all of this. He promised us trials...
We would like to introduce ourselves formally to you all. My name is Katie Lamprecht and my husband Jacob, sons Drake and A.J and daughters Kiara and Hannah live in a tiny town of about 900 people in Central Alberta called Evansburg.
Our daughters Kiara (9) and Hannah (7) are the most beautiful little girls you could ever imagine. Their hearts are made of gold and they are the sweetest most well natured girls I've ever known (not biased at all haha). They were thriving in everything they did and were developing perfectly normally until something started to change at the beginning of 2020. Hannah's teacher called us after they returned to school post Christmas holidays stating that Hannah could no longer see the board at the front of the class. She literally had to walk to the front to see and before we went on Christmas break she seemed fine. This is when the mystery began to unfold. We booked appointments with the optometrist and after a few months of back and forth and glasses that wouldn't work, we were referred to Dr. Ian McDonald by the optometrist. He fought hard to get us that referral and was rejected by other clinics but stopped at nothing to get us in as soon as he could. Finally in August, we got an appointment with The Eye Center at the Royal Alexandria Hospital. At that time, based on the photos of the eye we were diagnosed with Stargardt's disease. A rare medical condition affecting only the eyes of children.. It would eventually lead to blindness which was heartbreaking but what we were about to learn was something much more devastating - life changing in fact. We did the DNA sample for Hannah as her vision is much worse than Kiara's and on October 14 went back to Dr. MacDonald for Hannah's results. That is when our world literally fell apart in one moment. Kiara had the same photos of the eye and we received confirmation of her diagnosis on Wednesday, Nov 18, 2020.
We were given the diagnosis of Cln3 Juvenile Batten's disease. Since Kiara had the same symptoms, she got tested as well and unfortunately her results were the same as here sisters.
CLN3 Juvenile Batten's Disease is an extremely rare (5000 people in the world) neurological disorder that starts with vision loss It progresses to seizures, dementia and eventually they lose their ability to walk, talk, eat on their own and all motor skills completely. It is life limiting and the typical life expectancy of a Juvenile Batten's patient is late teens to early 20's.
Every child experiences this differently though as we have learned with our precious girls so there is no telling what will happen when. There is currently no cure for this nightmare of a disease. There are some experimental treatments available at Duke University in North Carolina. It is a stem cell transplant though and is very invasive and of course VERY expensive. The price tag to do this procedure is $1,775,000 PER CHILD.
It is covered by many insurance plans in the US but of course we don't have US insurance so at this point it is out of pocket. We are going to apply with Alberta Health Care to see if they will cover it but our hopes aren't high as we spoke with the doctor at Duke University and he has never seen the Canadian government cover this procedure before and likely if we do it, it will have to be paid out of pocket. That equals about $4.5 MILLION CAD for both girls. There are clinical trials in the making but nothing anyone is being recruited for at the moment and because of COVID there could be further delays.
We need to try to raise money so we can get the girls the treatment and drastically slow down this disease. Unfortunately, once the symptoms are too far gone, nobody will be able to do anything to help them so we are desperate at this point to raise money. Even if we don't qualify for that treatment, life has gotten very expensive and the equipment we currently need and the medications we will be needing in the very near future are incredibly costly. The time needed to care for the girls and the experiences we want them to have before they can no longer enjoy life. are costly as well and working a normal job has become an impossibility for either of us. We are humbly asking for help to assist us with with the cost of providing the best care and quality of life for our girls that we can. We sincerely appreciate any help you can offer in fighting this terrible disease.
We would like to introduce ourselves formally to you all. My name is Katie Lamprecht and my husband Jacob, sons Drake and A.J and daughters Kiara and Hannah live in a tiny town of about 900 people in Central Alberta called Evansburg.
Our daughters Kiara (9) and Hannah (7) are the most beautiful little girls you could ever imagine. Their hearts are made of gold and they are the sweetest most well natured girls I've ever known (not biased at all haha). They were thriving in everything they did and were developing perfectly normally until something started to change at the beginning of 2020. Hannah's teacher called us after they returned to school post Christmas holidays stating that Hannah could no longer see the board at the front of the class. She literally had to walk to the front to see and before we went on Christmas break she seemed fine. This is when the mystery began to unfold. We booked appointments with the optometrist and after a few months of back and forth and glasses that wouldn't work, we were referred to Dr. Ian McDonald by the optometrist. He fought hard to get us that referral and was rejected by other clinics but stopped at nothing to get us in as soon as he could. Finally in August, we got an appointment with The Eye Center at the Royal Alexandria Hospital. At that time, based on the photos of the eye we were diagnosed with Stargardt's disease. A rare medical condition affecting only the eyes of children.. It would eventually lead to blindness which was heartbreaking but what we were about to learn was something much more devastating - life changing in fact. We did the DNA sample for Hannah as her vision is much worse than Kiara's and on October 14 went back to Dr. MacDonald for Hannah's results. That is when our world literally fell apart in one moment. Kiara had the same photos of the eye and we received confirmation of her diagnosis on Wednesday, Nov 18, 2020.
We were given the diagnosis of Cln3 Juvenile Batten's disease. Since Kiara had the same symptoms, she got tested as well and unfortunately her results were the same as here sisters.
CLN3 Juvenile Batten's Disease is an extremely rare (5000 people in the world) neurological disorder that starts with vision loss It progresses to seizures, dementia and eventually they lose their ability to walk, talk, eat on their own and all motor skills completely. It is life limiting and the typical life expectancy of a Juvenile Batten's patient is late teens to early 20's.
Every child experiences this differently though as we have learned with our precious girls so there is no telling what will happen when. There is currently no cure for this nightmare of a disease. There are some experimental treatments available at Duke University in North Carolina. It is a stem cell transplant though and is very invasive and of course VERY expensive. The price tag to do this procedure is $1,775,000 PER CHILD.
It is covered by many insurance plans in the US but of course we don't have US insurance so at this point it is out of pocket. We are going to apply with Alberta Health Care to see if they will cover it but our hopes aren't high as we spoke with the doctor at Duke University and he has never seen the Canadian government cover this procedure before and likely if we do it, it will have to be paid out of pocket. That equals about $4.5 MILLION CAD for both girls. There are clinical trials in the making but nothing anyone is being recruited for at the moment and because of COVID there could be further delays.
We need to try to raise money so we can get the girls the treatment and drastically slow down this disease. Unfortunately, once the symptoms are too far gone, nobody will be able to do anything to help them so we are desperate at this point to raise money. Even if we don't qualify for that treatment, life has gotten very expensive and the equipment we currently need and the medications we will be needing in the very near future are incredibly costly. The time needed to care for the girls and the experiences we want them to have before they can no longer enjoy life. are costly as well and working a normal job has become an impossibility for either of us. We are humbly asking for help to assist us with with the cost of providing the best care and quality of life for our girls that we can. We sincerely appreciate any help you can offer in fighting this terrible disease.
Organizer and beneficiary
Manila Iwaskow
Organizer
Spruce Grove, AB
Katie Lamprecht
Beneficiary
