Many know Thea’s story & have helped her get to Dr. Feldman at the Paley Institute in West Palm Beach, Florida for a consultation. That trip seemed out of reach at first until we had kind hearts come together with their generous donations & it was soon a reality.

We are now hoping to make a trip back there for her to be operated on by Dr.Feldman a reality. But we need some help doing so.

For those who have not heard of Thea’s story.. Thea was born with a genetic condition called Larsen’s Syndrome. Neither her dad or I have the gene for Larsens, therefore it was a mutation that happened before 10 weeks gestation. There were a few signs when I was pregnant looking back but everything always seemed to check out just fine. She was in the NICU for 3 weeks after she was born & received her diagnosis of Larsens within a few days of being there.

Larsens Syndrome is a rare genetic disorder caused by mutations in filamin B and carbohydrate sulfotransferase 3 deficiency, that presents with characteristic findings of ligamentous hyperlaxity, abnormal facial features, cervical kyphosis, and multiple joint dislocations (information from orthobullets.com)

The way this syndrome presents in Thea is dislocations in both knees, clubbed feet (currently being corrected), tethered spinal cord, laryngomalacia & facial characteristics.

Thea was seen by Dr. Feldman, an orthopedic surgeon that specializes in Larsen’s in June. We raised money to get her there because our insurance is not in network & all medical appointments must be paid in full, prior to the appointment.

Now we are praying & hoping to raise money for her to have her knees operated on by Dr. Feldman. We were quoted $45,000 out of pocket (with a self pay discount). $10,000 of that is due at the time of booking the surgery & the remaining balance of $35,000 is due in full a month before the procedure.

We held a benefit for Thea with the help of friends, family & those in the community in September & raised $8500 which is an amazing start but we need a lot more for the surgery.

* I do want to add that we are very close to having the deposit covered but will need help with the two-three weeks we are taking off work to be in Florida for the surgery plus travel & extra medical cost we may run into (she has to have a pre op & post up app there which will be done a few days in between the surgery). Which is why the goal is set to $45k. It’s been so hard to save but we are doing our best. We also spent $500 of the fundraiser money for a video consultation with paley two weeks ago (they said we had to have this consultation before they’d give us an estimate) frustrating but they have been very cut & dry about the cost of things. *

Thea is currently seen at Cincinnati Children’s by quite a few different teams. They are a great hospital. However, they do not specialize in Larsen’s Syndrome. Larsen’s is a very complex disorder. A bilateral knee surgery seems kind of simple, almost like a cosmetic procedure but to Thea it’s between her walking or not walking… as her parents, it’s serious to us.

We very much prefer a surgeon who specializes in her condition & is confident that he knows what to do for her.

We understand whole heartedly how big of an ask this is. Our friends & family have already done so much for us & Thea. We need this to reach a much bigger audience. If you cannot donate, please pray that God will find a way & share this with your family & friends.

Thank you so much for helping our Thea.