Meet Lydia and Drew Wahlstrom. Lydia is a beautiful, spiritual, and passionate 14 year old young lady. Lydia loves all things Disney and her family. Her brother Drew is 11 years old. His mom says, "he is all boy." Drew enjoys playing video games with his dad. Both of their smiles can light up the darkest room. Unfortunately, the world went dark for this family when both of the children were diagnosed with the very rare CLN3 Juvenile Batten's Disease right before each of them went to kindergarten.
Batten Disease is described as a combination of five illnesses/conditions: blindness, seizures, dementia/Alzheimer's, ALS, and cognitive decline. It can also create huge issues with behavior, outbursts, and anxiety. CLN3 has no cure and is always fatal.
Throughout her life, Lydia has been affected in some way by all of the above symptoms. One of the biggest issues is communication—there is much frustration over no longer being able to remember words or being understood. She now uses a walker or crawls at home. She is forced to use a wheelchair full time when away from home. She continues to get weaker, especially her legs. Fear has caused great outbursts for things she used to do easily. She enjoys reading braille books. Lydia and her mom enjoy listening to music & singing, and they LOVE
to watch "The Voice.” She also LOVES
to do crafts.
Drew doesn’t seem to be progressing as fast as Lydia. He still has a very small amount of vision left, which doesn’t stop him in his LOVE
of Legos. He amazes his family in how he can still put those tiny pieces together. He loves Superheroes, Ninja Turtles and Star Wars. He has also really clicked with braille reading this year. Drew has started to feel more confident and enjoy reading. He likes to sing too....as long as no one is paying attention - LOL. They have noticed a decline in his walk. He cycles from very sweet and kind, to very angry with physical outbursts. His speech is starting to be affected more and more. He also struggles with Tourette's type of tics.
The family has gone through so many ups and downs in the years they have been facing this disease. They had spent two years trying to find a handicap accessible home to no avail. Most recently, they had a year and a half long partnership with a non-profit organization that was helping them build a home. While walls were going up, the non-profit abruptly closed it's doors, leaving the Wahlstrom's in a position of having to start over. Along with having to start a new project, they also have to start over with fundraising. There is a team working to recover the previous donations, but that could take legal action and time that they don't have.
The community that supports this family is large, caring, and giving in unbelievable ways. There have been fundraisers to help support medical necessities and home revisions. However, at this time the family is desperately in need of a home that can be designed to meet the changing needs of Drew and Lydia - so they can move freely and safely through their home, sleep and eat without risk of injury, have an accessible bathroom, etc. Money raised will hopefully make this goal of a new home possible and create new hope for the family. What is Juvenile Batten Disease
Children are healthy and develop normally for the first few years of life. The first sign of the disease is usually a gradual loss of vision between 4 and 7 years of age. This may be noticed first at nursery or at school. Vision changes rapidly over 6 to 12 months initially but children retain some awareness of color and light/dark until later. By the end of primary school, children are beginning to show some difficulties with concentration, short-term memory and learning. Many are still able to attend mainstream school but may need extra learning support in the classroom. The next stage of the disease starts with the onset of epileptic seizures (average age of onset of seizures is 10 years). Often the first seizures are motor seizures with violent jerking of the limbs and loss of consciousness. Seizures may be controlled by medicines for several months or years, but always recur, eventually becoming difficult to control completely. The pattern of seizures may change over time and other seizure types may evolve, such as vacant spells and episodes of partial awareness with fiddling and muddled speech.
During the teenage years children tend to slowly become more unsteady on their feet. At around the same time speech may become repetitive and gradually more difficult to understand. Not uncommonly children become anxious and tend to worry. Some feel things, hear voices or see things that are unreal. Teenagers become less able and increasingly dependent. The course of the disease is extremely variable even for children from the same family. The teenagers and young adults are much more able some days than others, especially in terms of mobility, communication and feeding skills. The disease progresses with periods of stability which may last months or years alternating with periods of deterioration lasting several months which may be triggered by intercurrent illness. Death usually occurs between the ages of 15 and 35 years.https://beyondbatten.org/understanding-batten/what-is-batten/
There are two ways to give. One is through this Go Fund Me page. The other is directly to the bank assigned. If you would like to follow the kids' journey and receive updates, check out their Facebook page. There are also links to other great stories about the kids.
Check payable to-Wahlstrom Family House Benefit
13999 60th St. N.
Stillwater, MN 55082
Thank you for supporting this wonderful family!!!
Facebook page:https://www.facebook.com/lydiaanddrew/ Lydia and Drew Super Hero Crew Shirts
(Another way to help raise money and awareness)
Click the "Shop all from Ragamuffin Design" for Grateful
Design shirts too!https://www.bonfire.com/lydia-drews-superhero-crew/?utm_source=mailgun&utm_medium=pledge_made_email_for_supporter&utm_campaign=fund_profile
Other articles about the Wahlstrom Family:https://minnesota.cbslocal.com/tag/lydia-wahlstrom/ https://minnesota.cbslocal.com/2017/12/23/wahlstrom-batten-disease/ https://minnesota.cbslocal.com/2019/05/31/family-battles-rare-batten-disease-accepting-donations/ http://www.fox9.com/news/st-paul-family-without-an-accessible-home-after-nonprofit-s-failed-promise