Leila's Leg Day: A Step Forward in Leila's FH Journey

*UPDATE*

Leila has had 2/3 surgeries! She had her tibia bone severed and we completed lengthening with her external fixator. Both tibias are now within 5 mm of each other. We’ve raised 3 months worth of living expenses while away from home and work, but will need to cover another unexpected 1-2 more months while her bone fills in and heals and is stable enough to get the ex fix removed in her final surgery of the year. We’re on the final stretch and need your help to make it through! 

We need $16,000 - $20,000 for 4-5 months of living expenses while away from home and out of work, and $6500-$12,000 for out of pocket medical costs. 

If you’re able to donate, even a small amount, every bit helps. If you’re unable to donate, sharing this GoFundMe helps tremendously. Please share and consider donating so Leila can continue receiving the care she needs at Nemours where her doctor is. God bless

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Leila is having another big surgery! On April 1, Leila will begin a 3-part surgery plan, with the first surgery being on April 1, 2025. This is a big deal!

As many of you know, Leila was born with a congenital condition called Fibular Hemimelia (FH), which occurs in about 1/40,000 births. Hers, however, is bilateral, which is even more rare, occurring in close to 1/135,000 births. She has completely absent fibula bones in both legs, contributing to her lack of toes, with only 3 per foot. God has blessed Leila in that by having bilateral FH, she has less of a leg length discrepancy than she would if it were only unilateral FH.

She has undergone 2 surgeries thus far, the first being her major tibia and ankle reconstruction surgery, correcting her legs to be in the position that has enabled her to walk! She was 2 years old when she took her first steps.

As she's grown, Leila has experienced more of a leg length discrepancy of about 3 cm, with her right being shorter, partially due to her right knee not being able to fully straighten. She got a shoe lift to help her hips, as a leg length discrepancy affects the hip joint. However, her right ankle has shifted significantly, causing daily pain and an inability to fully put her weight on her right foot.

This is where her 2025 surgeries come in! She will be getting an external fixator to adjust her ankle, knee, and address any leg length discrepancy. The April 1 surgery will focus on her ankle first, then the second surgery will focus on her knee and lengthening, and the third surgery will be the removal of the external fixator. This would all occur over a span of about 12-16 weeks. Dr. Shawn Standard at Nemours Children's Hospital in Orlando, formerly at Sinai International Center for Limb Lengthening in Baltimore, will be performing her surgery. He has been such an amazing surgeon for her in the past and very responsive and caring throughout every surgical process. We are very blessed to have found him!

This surgery will be life-changing for Leila and work to eliminate much of her daily pain. It has been a lot to process, but it is very exciting! She will be doing Physical Therapy (PT) 3-5 days per week following each surgery to help her recover and thrive. If you know Leila, you already know how resilient and strong she is. She is a testament to how God gives us strength. As I often remind her, we can do all things through Jesus Christ who gives us strength (Philippians 4:13). He has given me strength, as her mama, as well, navigating this FH journey. I am so thankful for the love of Jesus and the peace He brings me. God has blessed us with so many supporters, like yourself, and I am also grateful for all of you!

This is where I ask for your help. Amazingly innovative surgeries like the ones Leila is about to receive are, well, financially taxing to say the least. So, whether you can spare a little or a lot, we are grateful. Your donation will go toward medical bills, PT, flights to and from Nemours Children's Hospital, living expenses--as I will need to take unpaid family medical leave (FMLA), and other surgery & recovery related expenses. Thank you so much for your prayers and support!

God bless.