Harlowe Ilse's Battle with Batten Disease
Donation protected
Harlowe Grace Ilse
born March 9, 2018
daughter of Ryan Ilse and Erica Grabczyk
On January 3rd, 2021 Harlowe had her first seizure in her moms arms. A traumatic day that her mom Erica will never forget. After many many tests and Drs telling her parents that she wasn’t having seizures, on Jan 29th Harlowe was diagnosed and medicated for Idiopathic Epilepsy with general and focal features. In the quest to discover where her epilepsy was coming from they gave Harlowe a genetics test.
On April 2, 2021 Harlowe was diagnosed with Late Infantile Batten Disease (CLN 2). The results told them that both parents were carriers of a mutated gene (TPP1) that when combined causes Batten.
Batten Disease is an extremely rare genetic neurological disorder. There is no cure. As Batten progresses, children suffer cognitive impairment, progressive loss of sight, hearing and motor skills. Eventually, effected children will become blind, bedridden and have dementia. Life expectancy is 6-12 years old.
Here is a quick youtube tutorial on Batten Disease:
https://youtu.be/5_VdzpOa0zw%20(https://youtu.be/5_VdzpOa0zw)" target="_blank" rel="noreferrer noopener">https://youtu.be/5_VdzpOahttps://youtu.be/5_VdzpOa0zw (https://youtu.be/5_VdzpOa0zw)
There is hope. There is a treatment for 1 of the 13 types of Batten Disease.
Luckily, Harlowe's particular version, CLN2, is the only one that has an FDA approved. The treatment is called Brinuera. https://www.brineura.com/
Brineura (an enzyme treatment ) will slow or possibly halt the progression for a few years of this fatal disease.
Harlowe's treatment is an enzyme replacement therapy. It is a 5 hour infusion administered every other week in Madison. Harlowe had an implant put into her brain and skull. The reservoir sits under the scalp on the right front side of the head. It has a catheter that weaves through he brain to release the enzyme treatment to the cells.
Harlowe is a brave girl. Every treatment uses a needle to puncture into the implant. She has grown from fear of doctors to many "Thank you, Thank you"s. She takes Foxy (see photo) to every doctor appointment since she was born. Foxy is full of bravery, compassion. strength and positive vibes! Whatever Harlowe has done to her Foxy tries it first. BFF.
Help Harlowe Fight Batten! Please offer a gift.
The funds offered here will go directly to Harlowe and family to pay for medical expenses including travel and lodging.
Harlowe's parents would like to give her as many experiences and comforts as possible while she has her sight. (Unfortunately, the Brineura treatment will not slow the loss of her sight.), but there is hope with clinical trials coming soon. She may qualify for participating in these trials, but they would be out of state. Financial help will give Ryan and Erica a chance for Harlowe to experience her best life as well if they have to travel for clinical trials. In the future, expenses are going to grow for inside and outside of the home. Caregivers, equipment, safety bars, smart devices, etc.
gifts going directly to Harlowe Ilse:
1. give here with gofundme
2. give direct via Paypal or Venmo
3. stop in at groom for men, milwaukee, wi and give a check or cash
to Harlowe Ilse
donations for a cure (tax deductible):
https://www.bdsra.org
http://noahshope.com
join family and friends with
Harlowe's battle against Battens:
https://www.caringbridge.org/visit/harloweilse
Sign the petition for gene therapy clinical trials to start!
This petition was started by a fellow CLN2 mother. It is a petition to motivate the FDA to approve clinical trials for a potential gene therapy for all those with CLN2. This gene therapy could put CLN2 into remission until they are able to find the cure. This will extend CLN2 patients lives further than the current treatment Brineura.
Please help us advocate for all those diagnosed and their families! Keep the hope alive!!!
https://www.change.org/p/federal-drug-administration-petition-for-fda-to-grant-clinical-trials-of-gene-therapy-for-cln2-patients?recruiter=1137752751&utm_source=share_petition&utm_medium=facebook&utm_campaign=psf_combo_share_initial&utm_term=psf_combo_share_initial&recruited_by_id=a4b75470-d58b-11ea-8594-5111c4d71255&utm_content=fht-31437733-en-us:2&fbclid=IwAR3CQ7_-QmuRWLYRSB5G1vkw6TYZfXF1cg_J1-wyhvxcsr1ylrXdT6vlPB8
born March 9, 2018
daughter of Ryan Ilse and Erica Grabczyk
On January 3rd, 2021 Harlowe had her first seizure in her moms arms. A traumatic day that her mom Erica will never forget. After many many tests and Drs telling her parents that she wasn’t having seizures, on Jan 29th Harlowe was diagnosed and medicated for Idiopathic Epilepsy with general and focal features. In the quest to discover where her epilepsy was coming from they gave Harlowe a genetics test.
On April 2, 2021 Harlowe was diagnosed with Late Infantile Batten Disease (CLN 2). The results told them that both parents were carriers of a mutated gene (TPP1) that when combined causes Batten.
Batten Disease is an extremely rare genetic neurological disorder. There is no cure. As Batten progresses, children suffer cognitive impairment, progressive loss of sight, hearing and motor skills. Eventually, effected children will become blind, bedridden and have dementia. Life expectancy is 6-12 years old.
Here is a quick youtube tutorial on Batten Disease:
https://youtu.be/5_VdzpOa0zw%20(https://youtu.be/5_VdzpOa0zw)" target="_blank" rel="noreferrer noopener">https://youtu.be/5_VdzpOahttps://youtu.be/5_VdzpOa0zw (https://youtu.be/5_VdzpOa0zw)
There is hope. There is a treatment for 1 of the 13 types of Batten Disease.
Luckily, Harlowe's particular version, CLN2, is the only one that has an FDA approved. The treatment is called Brinuera. https://www.brineura.com/
Brineura (an enzyme treatment ) will slow or possibly halt the progression for a few years of this fatal disease.
Harlowe's treatment is an enzyme replacement therapy. It is a 5 hour infusion administered every other week in Madison. Harlowe had an implant put into her brain and skull. The reservoir sits under the scalp on the right front side of the head. It has a catheter that weaves through he brain to release the enzyme treatment to the cells.
Harlowe is a brave girl. Every treatment uses a needle to puncture into the implant. She has grown from fear of doctors to many "Thank you, Thank you"s. She takes Foxy (see photo) to every doctor appointment since she was born. Foxy is full of bravery, compassion. strength and positive vibes! Whatever Harlowe has done to her Foxy tries it first. BFF.
Help Harlowe Fight Batten! Please offer a gift.
The funds offered here will go directly to Harlowe and family to pay for medical expenses including travel and lodging.
Harlowe's parents would like to give her as many experiences and comforts as possible while she has her sight. (Unfortunately, the Brineura treatment will not slow the loss of her sight.), but there is hope with clinical trials coming soon. She may qualify for participating in these trials, but they would be out of state. Financial help will give Ryan and Erica a chance for Harlowe to experience her best life as well if they have to travel for clinical trials. In the future, expenses are going to grow for inside and outside of the home. Caregivers, equipment, safety bars, smart devices, etc.
gifts going directly to Harlowe Ilse:
1. give here with gofundme
2. give direct via Paypal or Venmo
3. stop in at groom for men, milwaukee, wi and give a check or cash
to Harlowe Ilse
donations for a cure (tax deductible):
https://www.bdsra.org
http://noahshope.com
join family and friends with
Harlowe's battle against Battens:
https://www.caringbridge.org/visit/harloweilse
Sign the petition for gene therapy clinical trials to start!
This petition was started by a fellow CLN2 mother. It is a petition to motivate the FDA to approve clinical trials for a potential gene therapy for all those with CLN2. This gene therapy could put CLN2 into remission until they are able to find the cure. This will extend CLN2 patients lives further than the current treatment Brineura.
Please help us advocate for all those diagnosed and their families! Keep the hope alive!!!
https://www.change.org/p/federal-drug-administration-petition-for-fda-to-grant-clinical-trials-of-gene-therapy-for-cln2-patients?recruiter=1137752751&utm_source=share_petition&utm_medium=facebook&utm_campaign=psf_combo_share_initial&utm_term=psf_combo_share_initial&recruited_by_id=a4b75470-d58b-11ea-8594-5111c4d71255&utm_content=fht-31437733-en-us:2&fbclid=IwAR3CQ7_-QmuRWLYRSB5G1vkw6TYZfXF1cg_J1-wyhvxcsr1ylrXdT6vlPB8
Organizer and beneficiary
Theri DeJoode
Organizer
Milwaukee, WI
Erica Grabczyk
Beneficiary