Help Rosalie's Family: Baby Dying of Walker Warburg Syndrome

J B is organizing this fundraiser on behalf of Kim Avenger.

Donation protected

(little video of Rosalie moving down below)

www.facebook.com/kimberly.avenger

www.facebook.com/jenbthomson

Kimberly and her family (husband Marc and 5 yr old son, Everett) are expecting a baby girl, Rosalie, who tragically won't survive post-birth. Rosalie has been diagnosed with Walker Warburg Syndrome, a fatal and rare genetic condition inherited when both parents carry the gene.

Since both Kim and Marc carry this gene, there's a 1/4 chance their next child will also have Walker Warburg.

Rosalie will face the following challenges:

Ventriculomegaly or Hydrocephalus: Water accumulates in the ventricles of her brain.
Lissencephaly: her brain lacks normal folds.
Cataracts: Clouding of the lens in her eyes.
Other brain abnormalities
Congenital Muscular Dystrophy: A particularly severe form, causing muscle fibers to weaken and deteriorate ᴜɴᴛɪʟ ꜱʜᴇ ᴇxᴘᴇʀɪᴇɴᴄᴇꜱ ꜱᴇɪᴢᴜʀᴇꜱ ᴀɴᴅ ᴄᴀɴ ɴᴏ ʟᴏɴɢᴇʀ ʟɪꜰᴛ ʜᴇʀ ʜᴇᴀᴅ, ʙʀᴇᴀᴛʜᴇ, ꜱᴡᴀʟʟᴏᴡ, ᴏʀ ꜱᴍɪʟᴇ, ʙᴜᴛ ꜰᴇᴇʟ ᴛʀᴀᴘᴘᴇᴅ ɪɴ ʜᴇʀ ᴏᴡɴ ʟɪᴛᴛʟᴇ ʙᴏᴅʏ. ❤️ (this one kills me to write) ❤️

It's a progressive disease, meaning her health will deteriorate rapidly until her organ systems cease to function. This disease affects every part of her body. Rosalie might be have 1-2 years, much of it spent struggling, but her parents are preparing for hours, weeks or months.

❤️ The financial toll of their medical journey has been significant even with insurance. A brief 15-minute consultation with a high-risk OB cost Kimberly $300 out-of-pocket. Today, she had appointments with a neurosurgeon, genetic counselor, and palliative doctor. Her upcoming week is equally packed, with visits to a regular OB, ultrasound specialists, and more. Often multiple visits in one day. Most of her days are now spent in medical facilities, caring for Rosalie, a child they sadly won't have much time with after her birth.

They will likely be left in debt without the presence of their child to comfort them.

So, Kimberly wants to make the most of her moments with Rosalie now, cherishing and celebrating her life.

❤️ While traditional baby shower gifts aren't practical in this situation, any support towards their medical expenses would be deeply appreciated. Or contributions allowing Kimberly and Marc a brief respite, like an evening out, funds for house cleaning, or a meal order, would mean the world to them.

Even a modest donation of $10 makes a difference: it's the emotional support that counts. Knowing that Rosalie and her parents are backed by a caring community helps lighten the immense weight they carry.

Further compounding their emotional and financial strain, Marc will have to return to his job as a long-haul trucker shortly after Rosalie's birth. This return to work, necessary to keep them afloat financially, means he'll be away during a crucial grieving period, leaving Kim alone to cope and manage the household.