On March 2, 2025, my first grandchild, Isobel Ann, entered the world. With only a 25% chance of not having a genetic disorder, we braced ourselves for the news. Our hope was that, if she did have one, it would be Ehlers-Danlos Syndrome (EDS), which is less severe than Nail Patella Syndrome (NPS), a bone, joint and muscle condition that could also affect her t

I first saw my beautiful Isobel about 30 minutes after her birth. As I looked at her delicate hands, I wasn’t even concerned that her little fingers looked backwards, what I noticed is that her thumbnails were missing—a symptom of NPS. Turning to my husband, Michael, I tried not to cry as I whispered, “She has it.” But despite this worry, she was the most beautiful baby I had ever seen. I gently reassured her, “Don’t you worry about those crooked little fingers….. Grandma will get them fixed, and if not, you are perfect no matter what.” 

In her in utero ultrasounds, Isobel’s arms were always tightly positioned against her body. We expected them to relax after birth, but they haven’t. They are unable to straighten, and most days, her arms remain glued to her sides, her tiny hands by her face. She can flex them to a 90-degree angle( an L shape) but that’s it. With NPS, it’s possible her elbows could be fused or her bones possibly have unfixable abnormalities common with NPS…… I pray that God will allow them to be fixed along with her right foot.

However, my fear of NPS being the worst diagnosis was misguided. Just two weeks after her birth, Isobel started experiencing joint issues—her right shoulder began popping, followed by her ankles and wrists. Soon, even her hips and lower back started popping. You can hear her joints snap even in the other room.  Her case of Ehlers-Danlos Syndrome appears to be very severe. I’ve accidentally hurt her just by picking her up, and one midnight call to the ER for a suspected subluxed thoracic vertebra has left us with the added burden of needing a doctor’s note to prevent CPS from being called if she ends up in the ER due to subluxations or dislocations, which is common for newborns with severe EDS.

At just nine weeks old, Isobel is already on a complex medical journey. She has referrals for genetics, speech therapy due to choking and swallowing issues, physical therapy, tests for kidney function, a pediatric dentist, and an ultrasound for her hips. Her fingers, arms and foot will need to be addressed at a higher level hospital.  She will be seen for limited care at a Shriners hospital in Louisiana but their Ehlers Danlos program is mostly PT based and for older kids.  

Most critically, we are seeking care at the Mayo Clinic in Jacksonville, Florida, where specialists understand EDS in infants. The estimated cost for an assessment there STARTS between $3,000 and $5,000, plus the expense of travel.   We have a referral to the Mayo Clinic in Florida but they DO NOT accept out of state insurance.  Isobel needs this visit ASAP to give her early intervention to help guide us on the correct pathway to reducing her symptoms/pain and increasing her quality of life with necessary treatments/surgery.

Despite our best efforts our finances are stretched thin. We were already struggling to keep Isobel on purchased breast milk, which is vital for her immune system due to her autoimmune issues. All her medical care, including doctor visits and necessary tests, are out-of-pocket currently even though she has insurance most expenses are not covered and the doctor she sees to best treat her doesn’t accept her insurance.  We are humbly asking for community support to ensure she receives the best possible care.

Isobel attended her first GOP Convention at just one day old, as her parents stood up for local change, corruption at the Capitol and humanure being dumped near their home. She has an entire movement cheering for her already.  She is the granddaughter of Storybook Farms and as such is destined to be a fighter… she just needs some kindness to help her get started in life.

Every dollar raised will be managed by us and used strictly for Isobel’s medical bills and ongoing treatment. 

Please consider helping this precious little girl get the best start in life. Your support means the world to us. Thank you for being part of Isobel’s journey!